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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.
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