Congratulations Ann Maxwell Has Won the Tesco Charity Mum of the Year
Dravet Syndrome Mum Wins Award
We’re extremely pleased to announce that Ann Maxwell, founder of the Muir Maxwell Trust, a paediatric epilepsy charity, won for the Mum of the Year Competition 2013. She will be honoured at London’s Savoy Hotel on March 3. The event will be shown on Channel 5 on Mother’s Day a week later. The Trust is named after Ann’s son Muir who lives with Dravet Syndrome and as the husband and wife team who are at the core of the Trabasack team have a son with the same condition, it is obviously an issue close to our hearts.
Charity Mum of the Year
The Mum of the Year Award is sponsored by Tesco and looks to find the most inspirational and amazing mums out there. There are just 35 shortlisted women, after over 2000 nominations and we’re especially pleased that Ann has won as her work for childhood epilepsy raises awareness of a range of conditions that many know very little about. Ann found herself nominated as her work in fundraising has secured over £8 million in funding into further research and information about paediatric epilepsy and committed £1 million to the construction of specialist research building at the University of Edinburgh.
The Muir Maxwell Trust
The Muir Maxwell Trust (MMT) was set up when Ann’s son Muir was diagnosed with Dravet Syndrome or severe myoclonic epilepsy. The condition has meant Muir has had seizures throughout his life and this has resulted in speech and developmental difficulties too. Muir is now 15 and via the MMT website you can read Ann’s blog where lots of info and updates regarding Muir’s progress are recorded as well as tons of useful information about paediatric epilepsy and seizures.
MMT aims to provide children with epilepsy and their parents/carers with practical support and in many cases, helping to speed up what can be an extremely slow diagnosis process.
Big Congratulations Ann!
The work Ann and MMT do makes a huge difference to many families and with more than 70,000 children living with epilepsy in the UK, the work is desperately needed. All of us at Trabasack wish you biggest congratulations on winning, which is thoroughly deserved and will help raise the profile of Dravet Syndrome and severe epilepsy in children. It is fantastic news.
Pictured is Joe the son of the Trabasack founders who was the inspiration Trabasack and who also has Dravet Syndrome.
for people interested in Dravet Syndrome and the latest research, a recent Conference report can be found here.
Ann Awarded her Prize and featured on Channel 5
Many Dravet families proudly watched Ann looking fabulous as she received her Tesco Charity Mum of the Year award on Channel 5. As one mum said “A much deserved award and great that you took every opportunity to tell the listeners about Dravet syndrome and how it affects our children and young people. Well done and thank you!”
When Ann’s youngest son, Muir, was finally diagnosed with Dravet Syndrome (a rare form of epilepsy that causes profound learning difficulties, behaviour problems and severe developmental delay) she discovered there was a lack of support available. Ann, 50, from Dalkeith, Midlothian, pledged to help other families get the diagnosis and care they needed.
‘I’d spent a fair amount of time mourning the loss of the perfect child I thought I’d given birth to,’ says Ann. ‘Learning about Muir’s condition was an awakening. He began having seizures when he was four months old and I noticed his language regressing as a toddler, but the medical profession didn’t acknowledge he had special needs until he was three or four years old. After a clinical diagnosis they speculated that he had epilepsy but we didn’t get results from the genetic diagnosis (which at that point involved sending his DNA to Australia and took over two years) until he was 10. That’s late – it impacts on both treatment and prognosis.’
Read the rest of the article here.
NEW book : To Touch An Angel’s Wings
Ann has written down her experiences about Muir’s life and her journey with the family in a new book which will be published soon, called “To Touch an Angel’s Wings”.
“It’s a book about our lives, It’s called To touch an angel’s wings which is pretty much a summary of Muir. Every cloud has a silver lining. He’s affected us, his brothers and everyone he meets.”
We look forward to more news and will update this post when the book is published.
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