From Healthy Baby to Terminal: Building Memories Despite Brook’s Rare and Fatal Tay-Sachs Disease Diagnosis
July 31, 2012
My name is Kate and I am the single mother of Jake (8) and Brook (20 months). Brook has been diagnosed with a rare, neurological disorder called Tay-Sachs. Tay-Sachs is extremely rare and always fatal in children. She was born perfectly healthy until the age of 6 months. Since then, she has lost the ability to do anything. She has never spoken, she has never walked, she is fed 100% by a feeding tube. She has no purposeful hand use, is unable to bare any weight on her legs and can not hold her head up due to severe hypotonia.
Just two weeks ago, we were informed that she has lost her sight due to a storage disorder that has destroyed both optic nerves and both retinas. Most children do not live past the age of four years old. We have been told Brook has a few months to two years at most.
We started a campaign which has become very important to our family for many reasons. Part of this horrible disease is atrophy of the muscles. They become stiff and eventually, unable to be moved at all. This is already happening to Brook, thus the most important reason was to keep her as comfortable as possible for the remaining time she is with us.
We only have one bathroom in our house and the tub is very small. I am hoping to raise enough funds to re-construct our downstairs bathroom into a full bath with a whirlpool tub that has a chair lift attached. The funds from this campaign will go towards the contractor, the electrician and the plumber as well as all of the materials needed. She will also need a special chair lift to put her in and take her out of the tub. Water changes Brooke by relieving the pain she has in her muscles and it hass become almost impossible to bath her in our small bathtub.
Jake, my 8 year old, does not yet know Brook’s disease is fatal. I want to be able to have a memory that we can all remember together before she is taken from us. Until then, my goal is to keep her as happy and as comfortable as possible.
I can’t tell you how much any donation will mean to us. To learn more about Tay-Sachs, please visit NTSAD (the National Tay-Sachs & Allied Diseases) organization.
Sincerely, Kate, Jake and especially, Brook
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