Hope For Sydney

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Sydney’s Needs

1. Sydney has a major convulsive seizure with EVERY bath due to temperature changes.  This is very common with Dravet syndrome. Currently our only bathroom is only 4.11 x 6.5, with only a 2x2 foot section of floor space.  When she has a seizure I have to remove her from the tub and take her to the living room where she can seize without causing additional injuries.  Mean while I am leaving a 2-½ year old (Sadie) in the bathtub completely alone.
2. The limited space in the bathroom does not allow room for Rooney, Sydney’s service dog, to accompany her in the bathroom. The ADA considers him Medical Equipment. He goes with her everywhere.  He is needed in the bathroom at this high-risk seizure time!
3. There needs to enough space for an adult chair since constant supervision will ALWAYS be needed while Sydney is bathing to administer her emergency meds. 
4. Our current bathroom door is not wheel chair accessible.
5. We have hard wood floor in the bathroom and Sydney needs softly padded carpet.
6.  Sydney needs a bathroom with a thermal control, since temperature variation causes more seizures. Currently I place a space heater IN THE SINK because there is no floor space and absolutely no counter space.  This is so dangerous!
7. Sydney has Ataxia, poor balance and muscle tone.  She needs safety handrails and supportive equipment in the bathroom.  The current plaster walls do not have sturdy studs to support such safety rails.
8. Our current toilet is so tightly squeezed between the sink and tub that there is no space to add support rails around the toilet.
9. We need a tub large enough to put both girls in the tub together, even when they are much older.  This way when Sadie is older she can help be “adult eyes” to help watch for a seizure while Mom can be cooking dinner just a few feet away, but out of eye sight from Sydney. Since Sydney can NEVER be left alone, she has to be with me while I bath Sadie, but our bathroom is too small.
10. Our tub is too small to add a tub seat in the future, and there is absolutely no space to add a larger tub.
11. Our tub has no “lip” along the rear wall, and Sydney sits facing me, with her back to the rear wall.  I need her to sit like this so that I can constantly check her eyes for oncoming seizures and consciousness.  Sydney has Myoclonic seizures (where she very quickly and forcefully throws her head straight back) every 2- 5 seconds during which, she involuntarily slams her head into the hard tile wall.  We need a tub that will sit several inches from the wall, or have a large lip around it.
12. There are many more advantages, which add up to a significant need!!
13. Sydney will ALWAYS remain living in this home with her parents.