Hello.... my name is Kate and I'm the mother of Jake, 8 years old and Brook, 19 months. Brook has been diagnosed with a rare, neurological disorder. She was born perfectly healthy until the age of 6 months.... she then 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, she can't bare any weight on her legs, she can't hold her own head up due to severe hypotonia and, 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 retina's. Brook was diagnosed with Tay-Sachs Disease on July 23rd, 2012. This is fatal. Most children do not live past the age of 4 years old.
This campaign is very important to our family for many reasons but the most important reason is to keep Brook as comfortable as possible while she is with us. 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 and we need to keep her as comfortable as possible.... we only have one bathroom in our house and the tub is very small. I am hoping to raise enough fund to re-construct our downstairs bathroom into a full bath with a whirlpool rub that has a chair lift attached.
I attached a picture of Brook when she was still able to sit in her bumbo chair and take a bath in the sink. She is in pure BLISS in this picture. Water changes her... it helps her.... it relieves the pain she has in her muscles and it's become almost impossible to bath her in our small bathtub.
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.
My goal is to raise enough money to complete this project and perhaps have additional funds to take my son, with Brook, on a trip. Jake, my 8 year old, does not yet know that what Brook has is fatal and she, most likely, will not live past the age of 4 years old. 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 and to learm more about Tay-Sachs Disease, please go to: www.ncbi.nlm.nih.gov
Sincerely, Kate, Jake and especially, Brook