Oscar Nattrass
Oscar's Duchenne UK Fundraising Page
Fundraising for Duchenne UK
Story
Late last year our 6 year old son Oscar was diagnosed with Duchenne Muscular Dystrophy (DMD). This is a rare genetic disorder which progressively causes all the muscles in the body to deteriorate and waste away. Diagnosed in childhood, it mainly affects boys. It’s caused by a mutation in the genetic code in cells which produce something called dystrophin. This is a protective layer which surrounds the muscle fibres. It affects around 1 in 3,500 boys and 1 in 5 million girls globally. Without treatment it often means children lose the ability to walk between the ages of 9 and 11. As the condition progresses the heart and lungs begin to struggle and children require additional medication to treat this, along with assisted ventilation at night. Most are lucky to make it into their 30s. There is currently no cure for DMD.
We’re in the early stages of this journey. Children with DMD often have mild behavioural problems associated with the disorder which can affect learning and development. It was for this reason we found ourselves being referred to our local Child Development Centre. It was this team that first spotted Oscar had the signs of this disorder and following blood tests, a hospital referral to the specialists at Evelina Children's hospital London, and a tense wait, it was confirmed on December 1st 2022 that Oscar did indeed have DMD. The first few weeks after were really difficult as we both struggled to come to terms with the diagnosis. We had our first appointment at the Evelina with the specialists in this field which was eye opening and very informative, we could not praise the staff enough for their empathy, knowledge and ongoing support. Following a recommendation from the Evelina Oscar started steroid treatment just before Christmas. Although not a cure, steroids help in several ways; by slowing down progression of the condition, preventing inflammation of the muscles to reduce wear and tear, they also help strengthen the muscles. They essentially buy us time but do come with some significant side effects related to long term use.
Whilst Oscar can’t run as fast as his peers, struggles a little with the stairs and finds school challenging from an academic perspective our son is a determined, happy, caring and fun loving little boy.
As you can imagine this has proven quite challenging for Lucy and I to deal with and accept. Breaking the news to family, friends and colleagues has been equally painful.
Thankfully due to the work of Duchenne UK and other charities; there is a considerable amount of work going into supporting clinical research for improved treatments and in time a cure, they also offer invaluable support and advice for families living with DMD. Most of this work is funded through charitable donations. As we’ve discovered charities such as Duchenne UK have been pivotal in getting funding for trials to take place in the UK. This means treatments and medications can be approved and brought into clinical use much quicker. Although we are in the early stages there is a real belief that a cure will be available within Oscar’s lifetime.
Duchenne UK is the leading DMD charity in the UK and was started by families affected by the disease: connecting the best researchers with industry, the NHS and families to advance and accelerate every stage of drug development. Together, we will end Duchenne.
My good friends Bruce, Ben, Steve, Steve, Jimmy and I are signed up to do the 45km Big Black Mountains Challenge on the 13th May 2023 to support the work of Duchenne UK.
It’s a difficult thing to ask but any donations would be truly appreciated in helping to slow and perhaps one day put a stop this horrific and devastating condition.
Thank you for all your support
Ian, Lucy & Oscar
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UPDATE 24/5/2023:
Well we did it!!! We managed to complete the circuit in 10 hours and 50 mins! Well beyond expectations and quite a surprise given we managed to accidentally cover an additional 2.5km or so…. Not sure who was map reading!?!
The day started off cool and misty at the beautiful Llanthony Priory but cleared as we ascended to reveal clear blue skies and the stunning landscape of the Bannau Brycheiniog (Brecon Beacons). Although it only got up to around 18C it definitely made the going harder and pretty tiring. I think all of us ended up a mild shade of lobster in parts…. Let’s just say the finish line was a welcome sight and the support provided by the organisers was fantastic. There was definitely a hint of the John Wayne about us by the time we got back to the hotel!
We’d like to say a massive thank you to Ben, Bruce, Jimmy, Steve and Steve for all the support, commitment, help, fun and cracking humour throughout. They really have gone the extra mile for our cause. I couldn’t have done it without them.
There’s already been talk of the next challenge… We’re in the process of setting up a Friends & Family site (Oscar’s Duchenne Challengers) within the Duchenne UK website so watch this space for further adventures.
So, a big thanks to everyone who helped support us and raise funds for Duchenne UK! The amount we’ve raised is just incredible. This far exceeded our expectations and will make a real difference to fight against this awful condition.
With much love and thanks
Ian, Lucy and Oscar xx
