One of the Cycling Team's friends and work colleagues at CSC, has an exceptional daughter, Sarah, and asked that we consider raising money for the Dame Hannah Roger's Trust (DHR).
DHR specialises in the care and education of severely disabled young people and has transformed Sarah's life.
Sarah has Ohtahara Syndrome (OS). OS is outwardly characterized by severe mental and physical disabilities together with intractable epilepsy that is often fatal. Tragically, most Ohtahara sufferers are not expected to survive infancy and for those that do, life expectancy is to the early teens, at best.
Sarah joined the DHR school when she was 15 - a very angry, difficult to manage young lady, whose behaviour at "interview" at 12 other special schools she had visited had been so awful all had refused her.
Sarah's parents were convinced that her degenerating "behavioural problems" were due to frustration arising from the limitations of her condition, not helped by lack of physio, speech therapy, and other support treatments.
True to form Sarah punched the headmaster at DHR as she got out of the car and, to quote her mother, "was just awful throughout all the assessments."
Fully expecting to be rejected again, Sarah's parents were delighted to be told by the headmaster that, "Sarah does not have behavioural problems, but she does have severe communication problems. Please will you let us help her. I can see an intelligence and a spirit in her eyes-we have to let that out."
And the rest as they say is history!
Against all the odds and prognoses, Sarah can now walk with help, understands just about everything that is said to her, can communicate very well using some speech and makaton, is clean and dry and feeds herself. The school's hospital has also helped Sarah survive a number of near fatal seizures that required admission to ICU.
At the age of 22, Sarah is confounding medical science and is the oldest surviving person in the world with OS, thanks in no small part to the innovative and specialist skills of DHR.
DHR is again breaking new ground in offering 24 x 7 care and stimulating activities to young people up to 25 years of age. DHR now also plans to extend its help to 'life care', with its new innovative facility at Seale Hayne, providing ongoing speech, physio and other therapies.
Sadly, the alternative for these young people is to be placed away from their friends and peers in Nursing Homes, where the environment for all concerned is often unsuitable.
Fund raising is very important to enable DHR to maintain, build on and provide more places in the stimulating environment and activities that it provides and which maximise independence and choice for the young people who, like Sarah, are lucky enough to have a place there.
Thanks for taking the time to visit my JustGiving page.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
So please dig deep and donate now.
