In January 2000, our eldest daughter Misha, then just 4 years old, was diagnosed with Late Infantile Batten Disease, a neurological degenerative illness. For months before, she had been having seizures, had trouble walking, had started to lose her speech & we were at our wits end as parents.
The diagnosis came as a huge blow, as the condition is always currently fatal. An even bigger blow was to come weeks later. As it is a genetic condition, we had to have our other two daughters tested. Natalie was just 2 at the time & our third daughter Sophie had just been born, days earlier.
To our absolute horror, Natalie was also diagnosed with the condition, despite the fact she was showing no signs yet - thankfully baby Sophie was clear.
In April 2000, feeling isolated & alone, we were introduced to Helen & Douglas House Children's & Young Adult's Hospice in Oxford. The team at HDH showed nothing but love, acceptance & compassion to the whole family & it became a place of santuary when our world was changing daily.
Natalie started to show symptoms in 2001 & by the end of that year was also largely wheelchair bound. We spent many days at HDH taking breaks from our busy lives & the 24/7 care that the girls needed - both lost all their skills & eventually became largely immobile, blind & unable to feed themselves.
The team at HDH held our hand through the darkest days. Misha died in November 2002 just after her 7th birthday & Natalie in December 2003, just before she would have turned 6. We will forever be grateful to all that HDH did & continue to do in supporting us as a family.
Rachel my wife now works for the charity as a care provider, showing the same love & compassion that we received to countless other families.
In April 2016 I plan to run the London Marathon, with the Kilimanjaro Climb happening in September 2016. As Rach, Sophie & Zak will support me practically as a family as I do these challenges, I hope you will dig deep & support the charity financially by sponsoring me & sharing my page, thank you.
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