Goodbye 2015, hello 2016! Here’s wishing each of you a happy and prosperous new year. For us it’s going to be a busy year, and January has set the trend. On the fundraising front, we have had our first planning meeting of the year, and agreed the date of the final annual Great Baydon Bakeoff for 5th March 2016. We say final bakeoff as after 3 years organising and running the event, for 2017 is probably time for something different, just not quite sure what different is as yet! On the Helping Hayden 2016 Ball front, tickets have been selling very well, now its time to get onto auction lots, details of which we will post on the site before the event.
Aside from a return to the usual routine of school, its been a quiet month for Hayden on the appointment front. A momentous event was the completion of the Millennium Falcon, of which he is rightly proud given its scale and complexity. Personally I was disappointed to be relegated to the role of build trouble-shooter, for which my services were only needed on a two occasions during the two week build.
Dawn is continuing to pursue every avenue on the clinical research trials front and turned up some useful though not directly positive) information which has been passed onto Action Duchenne for wider communication. Whilst on the subject of Dawn, the wires have been removed, the cast is off, the shouting at fitness class members is back, and normality should be returning soon – many thanks to friends and family who have provided so much help over the last two months. Further chasing has been done on the advocacy front regarding life assurance companies that provided cover including childhood serious conditions, but refuse to recognise DMD diagnosis until the child is paralysed. Owing to the aforementioned, caterpillar planning has taken a back seat this month.
On the hosing adaptions and extension front, we had news through ahead of schedule that are planning application has been granted approval. So now we are onto detailed plans for building regs approval, once we have these we can find out how much we need to find for the build. One issue has surfaced, our garage which requires modification for storage of equipment, turns out to have no foundations.
Ellie made us proud this month. She decided to donate her hair to the ‘Little Princess Trust’ charity – they make real human hair wigs for children that have lost their hair due to the effects of chemotherapy. To have twelve inches of hair removed, to benefit others, is a brave thing to do!
We have also had initial discussions with a friends daughter who is looking to organise a fund raising event as part of her community working for her Duke of Edinburgh award. We continue to be very touched by all those who use their time and energy to raise funds to enable Duchenne research.
So that’s it for Jan. Only resolution is to not wait until the end of Jan deadline to file my tax return!
Well the Christmas season is upon us again. Time for family and friends and catching up. Slight fly in the ointment was a call at work from a friend and neighbour saying ‘Dawn has had a fall’ – was expecting at least another 20 years until being involved in such a conversation. So with a badly broken arm/wrist and eventually surgery to hold the fragments in place, would seem that Dawn will be impersonating a Chinese Good Luck cat for December and Christmas will be brought to us by Amazon! Just as well that we have a pretty much appointment free month for Hayden.
Its been a fun festive time for us. Two Christmas days, three boxing days equals plenty of food! Percy has been happy eating bones, Hayden happy with lego, Ellie happy being artistic and Dawn happily sleeping. I’ve just been a happy observer! We had fun on Christmas eve making wooden deer from materials from the garden, and working with BSID – more details on the limited seriousness page.
Great news on the fundraising front. Good pub quiz at the Red Lion raised £29, very kind donations from proprietor and patrons from Baydon stores totaled £50 and the matched funding for my first and only Triathlon (from October) was approved.
So that closes out 2015. Wishing each of you a very happy Christmas.
Midway through autumn now, but has to be the mildest Halloween and then fireworks night in years. Dawns been on hols for a week this month, but pleased to report that the children suffered no long lasting effects from my cooking.
Beginning of the month was the Action Duchenne annual conference. It’s an invaluable opportunity to find out the very latest developments in Duchenne research. A number of the sessions were emotionally very challenging – discussions on how adults with Duchenne strive to live independently were both inspiring in terms of fierce determination to strive for normality, but also despairing in the realisation that independence requires a round the clock care team of around 18 people and coping with the condition and day to day leaving can leave many with no time for or energy for employment. The research streams demonstrated the many avenues of clinical investigation being actively progressed to find treatments or cures. From mechanisms to enable the body to resume dystrophin production (skipping), gene therapy, enabling the body to produce other proteins that may act as alternatives to dystrophin, anti-fibrotics to limit muscle damage, Cialis to improve blood supply to muscles and drugs to prevent muscle inflammation, the breadth of research is very encouraging. All that’s needed accelerated trials and a rapid process to get the drugs approved for patient use. Other useful sessions covered educational and learning issues, and the use of 3D printing with embedded technology to enable custom produced tools and equipment to be produced by and for those with Duchenne. It was great his year to have a number of close family at the conference – with so many key and useful sessions to attend it was very useful to be able to spread ourselves across multiple concurrent sessions.
No key appointments for Hayden this month, but two notable events occurred. The first was a call from the Wiltshire education board, which validated Hayden’s ‘My Plan’ and confirmed that he should receive 25 hours of teaching assistance per week, this was very good news. The second was the submission of our housing adaptions plans for planning approval - we are hopeful that if approved, then we should be building next summer!
The month closed with a fun Children in need day, with dressing up as a film character for school, and the celebration of Mum and Dad’s golden wedding anniversary – an opportunity for a good, fun, family gathering.
Well, it’s October already, not sure where the time has gone this year, it’s been busy!
So what have we been up to this month? Well the month kicked off with my SUP Olympic distance triathlon – 1.5KM paddle board, ( having paddle boarded only once in July), 40K cycle on my vintage 1985 bike( rebuilt by myself!), and a 10K run when running practice consisted purely of cross training.
Very pleased to say that I completed the course in 2 hours 57mins – Didn’t fall in from the board, the bike didn’t fall apart, and the knees still function – just pleased to finish. I would like to thank all who sponsored me, we raised £670 plus gift aid, which along with the Vodafone £350 matched funding – makes a big difference for the research. The £670 includes £100 raised by mum and her new 'antique trading' hobby - both fun and lucrative!
A big shout out to my work colleague of many years, Debby, who went one further and did the swim Olympic triathlon – serious respect! Plus another £170 raised which should also be matched funded.
11th October saw Mandy’s fantastic Oxford half marathon attempt – she displayed amazing drive and determination, and with a little ‘motivational help’ from drill sergeant Dawn, they completed the course in 2 hours and 47 minutes, and raised a fantastic £310! Anyone who puts themselves through such pain (and verbal abuse whilst training!) deserves the title of Haydens’ Hero!.
Aside from physical exertion, it’s been a very busy month on both the education and medical fronts for Hayden. He has had a cognitive assessment, a Saltway physio session and a Saltway educational Ocupational therapy assessment. In addition, we had another session with the teaching team, and Wiltshire education team to complete work on Hayden’s ‘My Plan’. This is what use to be known as a ‘Statement of Educational Needs’ and will ensure he gets the educational and physical support he needs in school to ensure his education does not suffer due to his condition. The decision on the amount of support he (and the school) gets will be made at a board meeting on the 27th October, so here’s hoping for a good outcome. If its judged by the number of documents and reports submitted, we should be OK! Hayden and Dawn also completed a paitient survey this month, for which both they and the charity (Action Duchenne) were paid – Dawn put her funds received toward blood pressure testing and urine testing kits enabling us to do these regular tests ourselves at home, and avoid further round of trips to the surgery each month!
What’s been happening on the research front? There has been much news about a new drug called Translarna. It’s the very first treatment to be licensed for Duchenne. It’s an ‘Exon Skipping’ drug so should restore production of the dystrophin gene in patients where the gene is corrupted at exon 51. However the drug has not been approved by the UK body ‘NICE’ as yet, due to cost and a number of outstanding clinical questions. It is great to see a drug finally coming to market, and whilst it will only assist 7% of boys with Duchenne it represents real clinical progress and hope. It won’t assist Hayden, not only does he have a rare condition (DMD) he has a rare form of a rare condition, hence our hopes still rest on potential treatments to benefit all DMD patents such as Utrophin upregulation, or synthetic dystrophin.
On the home adaption front, hopefully we are now ready for planning application submission, having just approved the final external elevation change this evening. No estimated build costs as yet, but this should ensure that 2016 is an exciting year! The plan ensures that as Hayden’s needs change and his condition advances, that we have the space and facilities needed to cope and make the most of time at home as a family.
Unfortunately we cursed the England Rugby team by getting along to the world cup to see the England versus Australia match for fathers 70th birthday. We were hoping to see plenty of England tries, but only saw one as they crashed out – It was great to see all the England try scorers doing the ‘Joining Jack salute’ after any try’s scored however – more publicity for DMD.
So aside from school trips, half term, riding lessons, swimming lessons, various clubs Ellie is involved in, planning, sponsored events, education streams, health streams and daily physio, its been a quiet month. Looking forward to Halloween, fireworks and the Action Duchenne annual conference – not looking like a quieter November!
‘Summer’ as it was, has been and gone, and its back to school. Both Ellie and Hayden are in new classes, and both have settled in well, and are working hard. Year 3 is quite a change in class structure for Hayden, and we continue to support his maths with extra lessons to help him to get his head around number concepts. He is however completely absorbed in his books, especially when they are science books. He particularly enjoys practical, hands on experiments - I can feel a shed exploding experiment coming on!
The big social calendar event this month was big sister Ellie’s 10th birthday. Where has that decade gone? Celebrations comprised home made pizza and film night with friends, the ironically named ‘sleepover’, a nice meal out, and the consumption of far too much cake!
On the fundraising events front, my sister Sarita is once again organising a ‘Helping Hayden’ spring ball, on 12th March, with all proceeds once again going to Action Duchenne. Given the success of the 2013 event, it will be a very very good night! Also secured the £350 matched funding relating to the Brownie’s sponsored silence this month. Triathlon training is back on again, although it feels like starting from scratch again post holiday excess. Dawn continues to verbally abuse Mandy all in the name of half marathon training.
Extension plans are still progressing. We have approved the internal and external plans, just need finalise the external finish - how do you tie in with or contrast with a house that’s evolved over 200 years which is made of brick, flint, sarsen stone, chalk, horse hair and anything else that happened to come to hand?
From a medical perspective, we’ve had an Orthotics appointment (to assess Hayden’s night splints and heel cups for size and fit), and an Orthoptics appointment, which confirmed that there are no concerns over the ability of his eyes to focus. The big appointment this month was the six month checkup at Great Ormond Street. Ormond street is always a long day, up at 6:30, a drive through central London during the rush hour, breakfast at Costa on arrival, appointments for most of the day and the return trip. The standard of care however makes it well worth the trip. Hayden had a 1.5 hour physio assessment, the usual weights and measures, an hour with the consultant, lung function tests, blood tests and a Dexa bone density scan. By the time all that was done, we left at 16:30 just in time to get caught up in the rugby world cup opening event traffic as we tried to get to the M4. The outcome of the day is that Hayden is still doing well, and his physical abilities have not yet plateaued, though his calves are becoming enlarged (fibrosis). A plateau will occur before his muscles start a rapid decline in strength and function. Given that he is 7, this is good news, and a little unexpected. He hasn’t shown the weight gain and behavioural issues that were expected from the steroids. The clinical staff are not certain as to why he is doing as well as he is, though we are very thankful that he is. Thoughts at the moment are that its a combination of factors – tightly controlled diet, use of the wheelchair only as an absolute last resort, keeping him as physically active as is possible (good length walks take a long time, but we get there!), nightly physio regime, plus the steroids. We are at the stage where the steroid dose could be increased (given natural weight gain over the year), but given how well his body has tolerated a full daily dose so far we don’t want to risk intolerance. Once he ‘plateaus’ we have the option to increase the steroid dose. Aside from this, his height is tracking below target, weight is slightly above) and blood pressure a higher than ideal – so we have some things to watch and work on!
Promising news regarding early outcomes from the phase 2 Utrophin Upregulation trial. Looking positive that there will be an open label trial with 40 boys in early 2016. So here’s hoping that Hayden is a candidate for the trial.
Summer holidays have arrived, and we have no clinical, educational, occupational therapy or physio appointments – must be time for fun and leaving the country to find some sun!
Ellie and Hayden wanted to visit the houses of parliament and the London eye, so first trip of the month was a trek to London. Visiting the Palace of Westminster was a first for all of us, and we all found it genuinely interesting – hadn’t realised how much of our democratic process was embodied within the structure and operation of the building. The view from the eye was a first for Hayden, but I never tire of the panorama. With some shoulder lifts, piggybacks, frequent rest stops and close car parking, we coped without needing his wheelchair.
The big August adventure was 12 nights in Rhodes. We had a fantastic time, despite deficit and euro concerns. The children were convinced that they could assist the Greek economy via consuming significant volumes of olives thereby increasing prices in the export market given increased scarcity of supply, and they very nearly succeeded. Between us, we ate too much, drank too much, had lazy days by the pool or being chased by inflatable sharks in the lazy river, watched the world go by across the blue depths of the Aegean sea, and visited the culture of the capital or the natural wonders the island had to offer. Highlights included the tranquillity of the Valley of the butterflies, the medieval walled city of Rhodes and the amazing narrow vine covered streets of Lindos beneath its castle topped with ancient Acropolis. We elected not to take Hayden’s chair, instead relying on his trusty ‘Trunki’ for mobility at the airport, and buses, taxis and hire car whilst abroad. Lindos was a tougher day physically for the family member now known as ‘Daddy Donkey’; Parking is outside the town, so dropped off the family, drove to the car park and trekked down to the town before a 30 min shoulder carry for the 125 meter vertical climb to the top of the acropolis. ‘Daddy Donkey’ put this one down to triathlon exercise, but the reward upon completion (aside from the view and culture) was a trip to the Lindos Ice Bar for a much needed cool down! We have to do these things whilst we can!
Fund raising this month included a very successful pub quiz once again at the Red Lion.
Another school year draws to a close, with a flurry of end of term school productions and sports dayWe have spent time this month working with the school and local authority to pull together all the paperwork needed for Hayden’s My Plan which should ensure he gets the right physical and educational support during his schooling. It’s a long,16 week process. But we couldn’t have asked for a more dedicated and caring teaching team than those at Baydon school.
Although the school is single storey, they will be putting in access ramps to every classroom over the summer break to ensure the whole school is wheelchair accessible, should it be needed in the future.
Discovered this month that I have been successful in getting a place for the Vodafone Big Bold Challenge Olympic SUP triathlon. The triathlon comprises 1.5Km of standup paddle boarding (which appealed though I’ve never tried it before), a 40 Km cycle and my nemesis, a 10Km run. Event date is the 1st October, so not far away from a training perspective. Evenings have been consumed with stripping and rebuilding my 1985 vintage road bike, which certainly has the wrong gearing for Baydon hills. Ellie and myself had a weekend away to learn to paddleboard together, coupled with a stopover at a Laura Ashley inspired ‘Shepherds Hut’ before mountain biking in the forest of Dean. Meanwhile Hayden and Dawn enjoyed the ‘Beaver Babble’ camp, including waterslide activities.
Medical appointments this month have comprised local physio and an Orthoptics appointment. The later looking at Haydens eyes and a concern as to whether both eyes are focusing correctly. Hopefully there will turn out to be no further complications in this regard.
Fundraising has been busy again, with another pub quiz at the Red Lion (fundraising and beer combined!) and the sale of numerous plants, lovingly cultivated by Mum, sold from the end of the drive.
Its now a year since Hayden started on Steroids, and we are relieved that he has tolerated them admirably. Its been an exercise in tough love at times, he was saying he was hungry when he first started on them (they increase appetite), but we haven’t seen behavioural issues and change. Physically he is doing well with his mobility so the steroids are helping.
After such a busy May, June has been quieter from many respects, which is quite a relief!
We have had another local physio appointment this month plus a trip to the local paediatric team and all seems good currently.
Discussions regarding educational needs statements with the school and local authority have commenced plus Ellie had a visit from the Spurgeons young careers team – she carries a far greater load on her shoulders in terms of concern for a siblings wellbeing and future than a child of her age should have to bear.
Further planning sessions have been undertaken with the local housing adaptions architect, and we have now settled on a working plan including a covered accessibility ramp and extension scheme. Hayden also went on his first school trip with his wheelchair for mobility this month, many of his classmates seemed keen to push!
May is always a busy month Howell household, which my birthday, Dawns, Hayden’s and Grandmas all in quick succession. This May was even busier than usual!
Having finally received the go ahead for Haydens operation (non DMD related, he really is that unlucky) in April, the op was done at Bristol childrens hospital on the 5th May. The team there were fantastic. Given the anaesthesia complexities associated with Duchenne, we were keen to get the surgery done whilst Hayden is strong, and the Anaesthetist took every precaution possible to ensure all risks were minimised, with a full angiogram and ECG immediately before surgery – Hayden’s getting to be an old hand at these procedures. The surgery went without a hitch, though a very tight grip was kept on Spuddy, and Hayden was home later that evening, rather sore and tired, but with very relieved parents.
Birthday celebrations focussed around ‘Dino-snores’ – a sleep over at the natural history museum. Fantastic time had by parents and children alike, with an after hours escorted tour around the museum, dinosaurs in the dark, a fascinating lecture on creatures of the deep, dino t-shirt making, plus a very nice meal with friends and a trip to the science museum, it was a great time. The wheelchair came along, but more because Hayden was rather sore from surgery than because it was necessary for DMD mobility.
Closing the month on the bank holiday Monday was the long awaited London Bupa 10K, including the Duchenne caterpillar – conceived and organised by Dawn. A caterpillar in running terms, is running with a single file line of people all tied together. Having been aiming for a world record, we were disappointed when the news from Guinness came though that we would need more people in the caterpillar than the charity had entries for the event, hence we came to regard the event as setting an unofficial course record plus a training run for a possible record attempt at a subsequent event. In the end we had a caterpillar of 36 runners plus 3 out runners to ensure safety, communications and warning other runners in the event that there was a 43 meter caterpillar about to go past them. It must be said that the training events, which comprised of runners meeting in various parks across the south, usually outside public conveniences where runners could be seen spending time tying each other up before setting off around various tracks did raise a few eyebrows! A big shout of thanks has to go to Chris for the attention to detail in his selection and assembly of the necessary equipment and to Paul from Action Duchenne for cajoling members and runners into the event. For myself, I went separate from the caterpillar, having been unable to train for the month before the event, but determined to make it round, I was expecting to have to walk the course, but in the end went the distance at a very slow jog. Hayden and Ellie were along with family and friends to watch. It was our first experience of wheelchairs and the joys of the London underground system – it’s not really an accessible transport system.
The lull before the May storm!
Easter was spent with family and friends at the Pine Cottage egg hunt, multiple trips out to local dog walking hot spots including Savernake forest and Avebury, Percy’s first birthday and practice caterpillar runs have filled the month.
It was a quiet month on the medical appoint front, just the one physio appointment, but we have finally (after 7 months) received word that Hayden’s minor op will go ahead – discussions had got very frustrating due to the involvement of so many different authorities all keen to absolve responsibility and pass the buck around from a budget perspective. Pressure from us, our GP and GOSH was finally brought to bear, the surgery has to happen whilst Hayden is young and at his strongest otherwise the risks climb significantly.
Multiple meetings and discussions regarding the home extension scheme with a ‘proper’ architect, instead of a fake ‘IT’ one!
Well January went by quickly! February and March have been just as busy! February started off with an appointment that Dawn and I had dreaded – Hayden’s fist wheelchair appointment. We always knew that the day would come, but little prepares you for seeing your child being measured for a chair. The staff did what they could to make it fun and up-beat for Hayden, he had a list of things we were looking for, and at the top was a need for it to be self propelled and red. As it happened, they had a red one in stock in his size, he gave it a good test drive and got some advice on handling – it needs a few tweaks and will be available in a few weeks. Its not as light as I’d like – a sports chair is only available if you’ll be spending most of your time in it. It’s a bit of a vicious circle, when his legs are tired he should be able to self propel in his chair, but if the chair is heavy he will struggle to self propel so will either not want to use it or we will have to push him, neither of which helps his arm strength and confidence, but you can’t have a lighter chair that is easier to self propel unless you are in it most of the time!
14th February, whilst being Valentines day, is also 3 years to the day since Hayden was diagnosed with Duchenne. Hayden decided to cover several bases this year by sending 3 separate cards to three different young ladies.
Mothers day was a fun day, enhanced by all the children from the school being involved in the service at the local church reading out ‘sugary sweet’ poems about their mothers – Ellie’s was a classic, read aloud ‘My Mum is an octopus, lying on the sofa drinking Pinot Grigio’ – inspired! Dawn and I also had two not entirely sober nights out this month – a quiz night for the local amateur dramatics company and a fabulous Octoberfest fundraiser for the planned Aldbourne new scout hut – been a very long time since I danced on a table!
The wheelchair arrived in March, and aside from a test run on the drive, its been unused since, buts it’s there ready and waiting for when we need it.
There have been multiple fund raising events during Feb and March. Baydon Brownies held a sponsored silence, raising over £700 – parents must have been desperate for peace and quiet to have enabled such a fabulous amount to be raised. The 2nd running of the annual Great Baydon Bakeoff was held on the village green. It was bigger this year, and very well supported by all in the village plus local companies and individuals who donated winners prizes and auction prizes. The bake –off organising team truly excelled themselves once again. I had the new experience of a live radio interview for BBC Wiltshire to publicise the event. There are requests next year for TV advertising, but apparently I only have a face for radio. Once again Vodafone provided £350 of matched funding in March.
Paula undertook a mammoth 18Km sponsored walk event in Paris. Alex (top chap from work) completed the Reading half marathon raising funds for Action Duchenne, and had the funds raised matched by Vodafone. Unfortunately during February due to a range of reasons, the decision was made to cancel the 2015 Helping Hayden ball – hopefully we can run the event in 2016. We also had a pub quiz at the Red Lion.
From a medical perspective, another GOSH visit in February – physio assessment shows Hayden is still doing well. Consultant discussion focussed on Hayden’s minor op, checking steroid dosing (no need to increase or ‘chase the numbers’ at this stage, and discussion on trials. Usual weights and measures plus lung function tests. Discussions on adaptions and wheelchair. Local paediatrics, physio and educational occupational therapy appointments also took place during the two month. The Occupation therapy session suggested use of pencil grips and writing slopes for Hayden to use at school to assist with writing. Another long day, made more bearable by visiting Krispy Kreme doughnuts on the way home!
So what happened to January? With the joy of post Christmas bills, back into school routine and the thrill of annual tax returns, the month seems to have disappeared. Its been a busy month. No Gt Ormond street or Great Western visits this month, but a team around the child meeting plus Swindon physio check, plus usual GP visits have kept us looking forward for Hayden's health in the coming year. Also had another visit from the architect for the housing adaptions needed - found out that Hayden's request for Feng Shui was actually meant to be a request for an en suite - glad we cleared up that confusion! Wheelchair referral has arrived, and Hayden is feeling very positive - hopes that this will enable him to keep up with his friends. We have also used the time to plan for a number of fund raising events for the year - Hope you can join us in some of them. Ellie continues to be the strong big sister, and has convinced the Brownies to undertake a sponsored silence in aid of Action Duchenne - here's hoping other parents benefit from the peace and quiet as much as we will! Here's to you in 2015!
As a family, we all love December. From the ‘discussions’ regarding the earliest permitted date to put the decorations up, through the ritual of advent calendars, the big day itself and the family time between Christmas and New year. School plays were great fun, Hayden as an angel, and Ellie with her first singing solo performed 3 times in front of a packed church (very proud of her special head teachers award). We had the family round to us this year, a packed house, plenty of food, too much drink, and plenty of long dog walks. . We had two bits of disappointing news during the month. The phase 2B trial of Utrophin Upregulation, which is our main hope for a treatment that will benefit Hayden, is full. The trial size is just 12 boys. Our next chance should be early 2016 assuming that the results look promising and that open label trials are funded. Our second disappointment was a delay in Hayden’s minor op, which is unrelated to Duchenne. Due to his condition and possible anaesthesia risks, any op has to be performed at a specialist paediatric unit, and the Bristol unit have stated that funding is not available. So we have to appeal to the exceptions committee, very frustrating when Hayden just needs the issue resolved. Fewer appointments this month – a measuring visit from the architect (hopefully see some plans in the new year) plus GP appointments for the minor op – good to have a quieter month. On the fund raising front, matched funding from Vodafone came through again this month.
Hayden’s laptop has gone down well – need to get him using a keyboard and familiar with typing and technology to help with fine motor skills and ensure that he can use technology as a tool as his muscle strength declines.
Has it really been 2 months since the last update? Whats been happening? Well the children survived 4 Daddy day care days – Dawn accompanied father-in-law to Krakow, so the children and I had fun at home. Think we tried most take-away outlets, plus a cinema outing. November also saw the 2014 Action Duchenne international conference. Myself, Dawn and Ellie went along. Two days of conference tracks covering every angle of the latest research and thinking on the condition, a sibling track, plus a social event. It proved a fantastic opportunity to hear from and chatto those performing the research. Some fantastic progress has been made in the lab, short form Dystrophin carried into muscles within a virus injected into the blood stream, exon skipping data (and the drive to get Translarna to market), biomarker studies (to arrive at more accurate measures of candidate drug effectiveness), possible studies on the use of cancer drugs, a possible drug currently used in chicken husbandry and also a certain drug used by men to improve blood flow! On the one hand we are very lucky (compared to parents a decade back) to being seeing such progress from multiple separate research teams providing a truly global drive to find a cure. The downside is that whilst the lab data looks promising, it is likely that some of the research that looks promising now, will not result in a drug becoming available to the market inside 10 years. I wish time could stand still for Hayden, but move quicker for the drug development. Many discussions over early access to candidate drugs, I can’t see why we can’t increase the trial size to enrol an increased number of children that are likely to benefit. It was also great to meet up with other parents in a similar position to us, learn from their experiences and also realise how lucky we are with the school Hayden attends – many horror stories regarding school attitudes, care and accessibility. Where is Einstein’s theory of relativity when you need it ? Closer to home (literally!) we had our first home visit regarding housing adaptions during November. The visit was from the home Occupational Therapist (articulates needs), the county appointed architect (provides an ideal design) and the grant body (looks to keep grants to a minimum). Our job is clearly to make sure that we still have a pleasant family home that meets our ongoing needs as a family, that’s fully accessible and provides all that we need as Hayden’s life progress’s through childhood, teen years and beyond if needed. The good news is that its been agreed that we are looking at an extension – there is no way that Hayden’s needs can be met via adapting the current internals of the house (split level ground floor, narrow doorways, low ceiling height inadequate for hoists). Downside is that the grants will probably max out just on groundworks, so looks like we need to find significant funds in the next 18 months. Ah well, we plan to build once in terms of providing the space needed for the future, and then equip as and when needed.November also saw firework season, great time to get together with friends for some much needed catching up. October saw our rapidly becoming tradition village pre-trick and treat Halloween party, not sure where Dawn was that evening, but there was a strange apparition outside the house. Fundraising mainly consisted of StopTober, (meant to be a dry month – couldn’t cope with that thought so stopped shaving instead), followed by MouVember, which is always good for a selfie. Funds came in from my parents auctioning some items, plus the joys of the Locke Legacy via Ebay – must be getting closer to shifting the backlog!
September 14 Update
Back into routine as September sees the end of the holidays. It’s been a rollercoaster month. The Four Marks Ball was a great evening, the organising team worked so hard, and the entertainment from Blobby Williams and the Stone Geckos was first class. We had so much fun and the event raised over £10500 to split between Cancer and Duchenne charities. The Nuffield Combatathon was a very well organised event, enjoyed by over 60 highly motivated fitness fanatics for 5 hours. Personally I stuck to the cake stall! Looking like the total will be over £3500 to be split between Duchenne and Hampshire baby care unit. We also had a follow up appointment back at Gt Ormond Street, as it has now been 3 months since Hayden started on Deflazacort. The physio assessment went well, and he has gained some skills since starting the steroids – he can now hop. The team were pleased with his mobility and flexibility and such improvements when starting steroids are not unusual. The team did say that this improvement may be short lived and it’s time to sort out a suitable wheelchair, ready for when it’s needed. We also had a chance meeting with the trials lead whilst Hayden was providing a blood sample for the rare conditions bio-bank. We were able to have a good discussion about the forthcoming Utrophin trial and we very much hope that we get the opportunity for Hayden to be involved with this trial toward the end of the year. We also talked at length with the Neuromuscular clinical nurse specialist about how Hayden is coping and how we are adapting to his condition. With so many discussions on home adaptions, wheelchairs, the first time I’ve had to drive Hayden when the other children have undertaken a lengthy walk (he’s getting heavy too for shoulder carries over longer distances) it’s becoming more difficult to focus on the positive at times. Whilst we try to focus on the here and now and enjoy the moment, thinking about plans and the future makes me realise that I am still in denial of the impacts of Hayden’s condition. Facing the future when your son has Duchenne leads to a very insular outlook. I hasten to add that all support in any form is very much appreciated. Back to positives, Hayden’s settled quickly back into school and his concentration is much improved – not sure if this is down to the steroids or the positive impact of having a new member of the family to look after, and educate – Percy Puppy.
July / August 14 Update
After a quiet July, with end of school term school reports, school plays and sports days, suddenly we are into Holiday season. Percy has finally completed vaccinations and is now able to walk rather than be carried. He was getting heavy, and a push chair became a necessity! With Percy in tow, we’ve camped in Cornwall, Corfe castle and Weymouth – great fun, but we missed some home comforts. Hayden is tolerating the steroids very well, with no sign of behavioural issues, which we were very concerned about. Some requests for more food, but after an explanation of the steroids being the probable reason we are maintaining diet control. Tough but necessary. He has also undergone the first round of monthly blood pressure check and 3 monthly eye tests. Another paediatric appointment about an unrelated issue, and it looks like he will need a minor op. Ellie is showing considerable skill as an animal trainer, spending many hours teaching Percy to ‘sit’ and ‘lay down’. This persistence paid off in team Ellie/Percy’s impressive 3rd place in the best child handler class at their first ever dog show, against stiff competition. Not much fundraising this month – some final cheques from Dawn’s marathon paid in plus Ice bucket challenges for Action Duchenne. Sadly lost my much loved Aunt to cancer in July, she is missed by all of us.
June Update 14
Percy has arrived! With great anticipation (and a little trepidation) Dawn and I picked up him up on a Friday evening and have spent the remainder of the month ‘clearing up’ after the newest arrival. He’s settled in really well, rightly steals our evenings for puppy playtime and has bought a different dimension to our lives. The same weekend saw Hayden start on his steroid regime – taking a little time to get used to three tablets with breakfast in addition to his other medication, but he now proudly wears his medic-alert bracelet. A big weekend away at ‘Beaver Babble’ for myself and Hayden – we both had so much fun - craft activities, fencing, giant catapults, drumming and turns out Hayden is a wizard push cart driver! Fundraising this month included Olivia’s loom band sale (£60) and £350 matched funding from Vodafone.
May 14 Update
May is always a busy month with 3 family birthdays, including Hayden’s sixth. We had another trip to Gt Ormond Street for decision time on steroids and the baseline tests. In a single day, Hayden underwent a lung function test, Dexa bone scan, blood tests, full physio assessment, ECG, Angiogram and we spent well over an hour with the consultant. So impressed with how well organised they are, and how Hayden copes with such an intensive day. In the event, the steroid decision was not difficult, despite the impacts of the side effects (appetite increase, stunted growth, behavioural issues, reduced bone density, cataracts, delayed puberty, high blood pressure, stomach issues), the prospects if Hayden didn’t start on steroids now are stark. We have gone for a less common regime – Daily Deflazacort, as weight gain is believed to be less of an issue, and the higher the dose, the better the life expectancy and the probability that he will still be walking in his teens – we can always reduce the dose if the side effects are severe. With Hayden’s birthday finally came the opportunity to join Beavers, and he was very proud to gain his woggle having been formally enrolled. Another big decision this month has been the plan for a new family member – a gorgeous golden retriever who we’ve named Percy (after Percy Jackson!). We are all very excited about Percy’s arrival which should be mid June. What else have we been up to? We had the opportunity to join in ‘Chalking’ of the Uffington white horse – an unusual and exclusive bank holiday event. The Accenture half marathon plus cake sale raised £1027. Vodafone matched funding for the 2013 summer festival has paid £17345 across to Action Duchenne. Sad news in May was the loss of the loss of Grace who had bravely battled cancer over the last year –a truly inspiring lady who touched the hearts of many and a real affinity with the children.
April 14 Update
The key activity for us this month was an epic adventure for Myself, Ellie and Hayden. We went up to London on the 13th April to watch Dawn complete the London Marathon – crazy! Not sure who worked hardest, Dawn with the running, or cross London child herding and marathon shoulder carries, but Dawn definitely won on the achievement and blister stakes! Simon (a good friend), and Dawn raised over £5000 between them. Another trip for Hayden to physio in Swindon plus the casting and arrival of new custom made night splints (complete with tractor and car design!) and heel cups. Family trip to the Doctor Who exhibition, annual Pine Cottage Easter egg hunt and Mandy’s splendid first 10K run (raised £400) rounded off another month.
March 14 Update
The Great Baydon Bake off – what a fantastic event! I felt elated walking to the village pub on a Saturday morning, and seeing so many Baydon residents leaving their houses and making the trek to the pub to drop off their fabulous bakes for judging. The pub was packed, over 50 entries, and most entrants made full use of the bar facilities and the raffle whilst waiting for the judging and results. All the cakes were sold, as was all of the bread donated by two bakeries. This event may become an annual feature on the calendar! Very nice weekend away for Grandad H’s 70th birthday in a beautiful country hotel in Devon, not sure who was more trouble – granddad or the children – lots of fun, and the ‘lego room service’ was a big hit. Closed the month on a high with sports dressing up day at school, another pub quiz, an approach from an Accenture collegue regarding fundraising from the Reading half Marathon plus first tranche of funds raised from the 2013 summer festival has been paid across to Action Duchenne.
February 14 Update
February 14th saw the second anniversary of Hayden’s Duchenne diagnosis. Valentines day, whilst still celebrated is rather low key. However, it does provide the opportunity to reflect on the support from family and friends over the past two years, the events undertaken and look forward to the events for the coming year. Another sponsored silence, this time by Ellie, a fabulous 10 hours without the usual stream of questions, and an aura of serene calm en-route to Hayden’s Saturday swimming lesson! Another red Lion pub quiz in support of Helping Hayden sees more pounds heading to Dawns Marathon sponsorship. Preparations for the Great Baydon Bake Off are in full flight – exciting times.
January 14 Update
Another year begins, and its not looking like its going to be a quiet one! Dawn's cracking on with marathon training and Obsessive Running Disorder is hitting new levels of intensity. The Great Baydon Bakeoff has been organised (further funds for Action Duchenne). We have had another quiz night for Helping Hayden at the pub. Hayden had his Great Ormond Street appointment - we were very impressed with the team there, with the information they have on trials, the tests they performed (lung function and physio), and it looks like it is time for the decision on steroids. One of Ellie's school friends raised more that £110 by undertaking a 10 hour sponsored silence over a weekend (brilliant idea for a peaceful six nations Saturday). So coupled with the joys of annual tax returns, its' been another busy month!
December 13 Update
Well, its new years eve. Another year has been and gone. It's been another rollercoaster. We have high hopes for 2014. My cross training challenge completed during our party on the 20th. Dawn has had Christmas off from marathon training for London. We had a fantastic phone call on the 27th December - Hayden's referral for Great Ormond Street has come through - this is key to getting him the best care going forward and the prospect of clinical trials. The Utrophin upregulation trial is commencing with 12 UK boys - we hope that this will provide positive results anticipated and provide hopes for a treatment. Our local, the Red Lion in Baydon, which holds regular quiz nights every Thursday, has assigned one per month to helping Hayden - the first one raised £40 a couple of weeks back (a certain team from Pine Cottage won!). Our quest for physical adventure and the outdoors for Hayden continues - it was slow going, but with support and the encouragement of hot chocolate we made it up Beacon Hill. Still awaiting payment from the Summer Festival across to the charity - hope this will be resolved early in Jan. Wishing each of you a happy and healthy 2014 and thanks for all your help and support in 2013.
November 13 Update.
Hurtling headlong towards Christmas, and things are still very, very busy. We are still optimistic for Hayden’s Great Ormond Street referral. There's the forthcoming start of a small Utrophin upregulation trial (12 UK boys) - it'd be fantastic if Hayden were to be selected. Dawn went along to the Action Duchenne annual international conference - difficult to see boys/men in advanced stages of the condition, but a great opportunity to find out the latest on clinical progress, physiotherapy techniques and talk to the experts and other parents in similar situations to us. Dawns marathon training continues, as do my fund raising exploits - the great cross training challenge - 599km in 100 days on my clothes horse aka Bertha the cross trainer. The mundanity of the challenge has been relieved via other activities along the way - sudden hair loss (sponsored!), the great Mo-Grow and a few daft pics along the way..... see the 100 day challenge page....
October 13 Update.
Where has the time gone? Its been a busy 4 months or so. We have had school summer holidays, a number of camping trips (garden, Kent, Wye, Weymouth), canoeing down the Wye valley, the return to school, Ellie's 8th birthday, back to school, plus numerous other events. Hayden has had further neurology and pediatric appointments, physio appointments, discussions on steroid trials, hopeful of a Great Ormond Street referral, and follow-up on a possible eye issue (related to muscles).
We are doing all we can to enable Hayden to experience as much as we can whilst he has his mobility; we have swapped from RDA to private riding lessons (to minimise taking him out of school), he loved indoor skydiving (Ellie's birthday treat) his confidence given his age let alone his condition was fantastic to see, wasn't too fond of canoeing on the Wye (until we stopped for a chocolate break and then he loved it) and he is now able to cycle himself with stabalisers.
Hayden and I had a lads day out at Portsmouth Historic dockyard discovering ships and cannons whilst Dawn and Ellie had girly day in London.
In terms of fundraising, colleague Mark Brewer completed a Lands End to John O’Groats cycle. Colleague Paul Weeks undertook a 3 day 300 mile Vodafone organised cycle tour of UK offices. Then we come to my own challenge - 599km in 100 days on my clothes horse (or cross trainer to be more precise) plus the annual Mo-Grow and a hair cut! Dawn has also recently had a place at the 2014 London marathon confirmed, crazy fool!
June 13 Update.
Wow, what a month. The summer festival on June 8th was a huge success - the 2012 event managed 900 people. This years event had 1900! The weather made a huge difference - hottest day of the summer so far. The organisation was first class, entertainment, bands, food, reverse bungee provided a full on day. Beer and Pimms flowed (ran out of real ale, and Pimms). Great to have seven of the Action Duchenne team with us for the event - they worked so hard to help wherever they could lend a hand. The Auction at the event raised £7200, 1700 raffle tickets were sold. We won't know the total for the event for another month or so - its like running finances for a business, some sponsors want to pay invoices directly, others want to make direct charity donations.
Received notification that the Vodafone matched funding (£2800) for the March 13 Ball was paid to Action Duchenne on the 30th May. Also I have put in another maximum claim for this quarter, given the generosity of people and the funds raised since March.
A friend and colleague, Mark Brewer, will be undertaking a heroic Lands end to John O Groats cycle during July, and I was thrilled when he told me he had selected Action Dunchenne to be the charity that would benefit from this mammoth undertaking!
May has been a very difficult month for family and friends. We had the joys of family birthdays, Hayden's 5th and the corresponding party (Karting this time), mine and Dawns (won't mention ages).
We had a fantastic time with the Lambourne RDA group at the Royal Windsor Horse Show - where their entry of 'Peppa Pig' in the RDA showing class, featuring Hayden as Peppa Pig, was placed first. Hayden was a little sceptical of a pink dress, but refused to take it off for the rest of the day once it was adorned with a large red rosette.
On 14th May we received news that we were desperate not the hear. Pam finally lost her long battle with cancer. Impossible to put into words the void left by someone who remained so up-beat whilst she fought with the condition. We would like to thank all those who offered words, help and support over this time, and all those who donated to the Duchenne cause instead of further flowers at the funeral - she would have approved.
18th May - Attended the Action Duchenne national conference - well run and very informative. Useful information on steroid trials, Action Duchenne research strategy, the chance to meet other parents, people living with the condition plus the people behind the charity.
Kareen's 'Hope Springs' exhibition resulted in a total donation of £261 for Action Duchenne - clearly many enjoyed the feast of art adorning the walls of 'Little Bird' studios - and the children certainly enjoyed 'artwork' production! Many thanks.
April 13 Update
Great holiday with Sister-in-law and family, great to get away and re-charge over Easter week.
10th April - educational psychologist meeting (statement preparation). Picked up new night splints - Hayden very pleased with them - they're decorated with a school of fish which he chose, and they are so much easier to use.
Our good friend Kareen is putting on an art exhibition at her studio from Sunday 28th April and running through to the following weekend - fantastic idea, the children have loved being involved, and publicity on the front page of the Newbury Weekly News and Marlborough and Pewsey Gazette and Herald.
Vodafone summer festival organisation progressing, all bands booked, reverse bungee booked, and about to order the tickets from the printers.
Very kind donations received during the month, from people that couldn't make it to the ball, and one for Dawn face painting at a good friends child’s party.
The painting kindly donated by Mr & Mrs Hutton has been sold for £250, and the commission was waived.
Hearing promising news on the clinical research front - some good reports on Exon Skipping trials (unlikely to help Hayden due to his uncommon exon flaw) and target trial for Utrophin upregulation (H2 2013) which is the one we are hopeful will help Hayden.
Baydon obsessive runner Harriet is having a go at cycling, and is doing the Prudential London-Surrey 100 mile cycle on 04/08 and raising funds for Action Duchenne - her JustGiving page is here; www.justgiving.com/Harriet-Knowles1
March 13 Update
After the fantastic ball on the 9th March, all funds raised on the night have been passed to Action Duchenne. Applied for 'matched' funding from the Vodafone foundation for the 8 employees that helped us - should mean another £2800 to the charity in four to 6 weeks!
Fantastic quiz night held at the 'Document House' in Newbury for Vodafone employees on the 19th March - organised by Melissa and the graduate social committee - the event was packed - 160 people, and raised a fantastic £1187.07 plus £273.52 and that’s before Vodafone Foundation matching!
27th March, Hayden’s casting for his new custom made night splints, plus another round of blood tests, this time for chicken pox anti-bodies - tests were OK.