Help Ride to Give and Sunshine on a Ranney Day create an amazing in-home therapy room for Katie Graham who suffers from mitochondrial disease.
Katie Belle will be 3 on November 10th. She is a beautiful happy child, but with mitochondrial disease and all the awful trappings that come with it. It is degenerative, so her loving parents really have no idea what the future holds. "Mito", as it is called, is a horrific disease of the mitochondria, which is in every cell of our bodies except for red blood cells. Sadly there is no treatment and no cure.
In Katie's case, she can't take her clothes off or put them on, clap her hands, play peek-a-boo, wave bye-bye, or use a potty chair. Katie has no sense of danger and can walk and climb and jump off of things. Keeping her safe is a 24 hour job. She has esotropia strabismus (an eye turning inward), farsightedness for which she wears glasses, bilateral reverse slope hearing loss for which she wears hearing aids, lactic acidosis, complex IV deficiency, reactive airway disease, eczema, and global development delay. She is non-verbal, has decreased muscle tone, mild GERD, and temperature intolerance. Her balance is still bad but is improving since she got her new orthotics. She does not understand speech except her name and "no". Yet this beautiful girl is very happy all the time and moves around constantly when awake. Because of her mitochondrial disease she sleeps a lot. She is only awake 8-9 hours a day. She currently receives occupational therapy, speech therapy, physical therapy and feeding therapy.
Katie has a weak immune system so her parents try not to take her out unless absolutely necessary. Every time she is sick, they have to take her to the ER to be admitted so she can be on IV fluids to keep her lactic acidosis in check. She loves water and outdoors and loves to be tickled by her Daddy and chased around the yard.
Here's where the RTGA comes in: Katie's parents Teresa and Dustin want to turn a room in their house into a therapy room for Katie so she can be at home and lower the risk of colds and flu that can only make her disease progress faster. Specific items we are looking at are learning/therapy toys, like switch operated toys, sticky balls to learn to throw (they stick on a mirror or window), window clings that we put just out of reach so she can practice standing on tip toes and reaching, and a dry erase/chalk easel. Certain sensory items, like doorway curtains on the walls, a tactile wall, a tactile/ball pit, tactile puzzle piece mat, a weighted blanket, fiber optic spray, or a vibrating bubble tube w/ platform. There are thoughts of a desk for school work and a rifton chair (she has to be restrained or she won't stay seated) with a calming vibrating mat under the cushion. Or a folding plastic table for messy projects. A shatter proof mirror for throwing sticky balls and reaching for window clings. For physical therapy there could be a crash pad, folding trampoline, stepping stones, balance beam (everything for an obstacle course), therapy ball, scooter board, a platform swing (dual purpose: can be used for OT or PT to help build core strength), tumbling mat, or other swing attachments.
Our goal is to raise $15,000 for the Graham family to purchase the therapy equipment needed and to help SOARD offset the costs of renovating that portion of the Graham home. Katie is a vibrant wonderful child that in some ways seems so full of life, yet the sad irony is that she is not. She is a walking representation of dreams that will never be realized and milestones never to be reached. She breaks our hearts.
Please help us and Sunshine on a Ranney Day create an in-home therapy room for the Graham family to keep her happy and "healthy" for as long possible. Every day is precious and should be lived to the fullest.