Taelor was diagnosed as a Manifesting Carrier of Duchenne Muscular Dystrophy September 2014, at the age of 8. Duchenne Muscular Dystrophy is a genetic disorder characterized by progressive muscle degeneration and weakness. DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Symptom onset is in early childhood, usually between ages 3 and 5. The disease primarily affects boys, but in rare cases it can affect girls. Taelor is one of the "rare" cases.
The symptoms of DMD are: Muscle weakness which can begin as early as age 3, first affecting the muscles of the hips, pelvic area, thighs and shoulders, and later the skeletal (voluntary) muscles in the arms, legs and trunk. The calves often are enlarged. By the early teens, the heart and respiratory muscles also are affected.
Taelor is turning 12 on October 4th and is getting weaker by the months, it seems like now. The insurance approved her manual wheel chair and a walker, with a out-of-pocket payment, of course, and will not approve a power wheel chair until she has had the manual one and it is "documented" that a power wheel chair is "required." She loves her new manual wheelchair because she got to customize it herself, but, her arms are almost to the point of being unable to move herself for a long enough period of time to get anywhere in a efficient amount of time without needing a break.
That being said, the insurance wouldn't even approve to pay for her genetic testing, or the initial care, leg braces, etc. because there was "no prior family history" of the disease. That was a battle just to get it partially approved after many appeals.
DMD is a progressive muscle degenerative disease, and the difficult thing with a disease such as DMD is that every individual that suffers from this disease progresses differently. Taelor cannot, without help, get down 1 step to go outside, sit down on the floor to play with her baby sisters, without absolutely needing help up. She can't walk across the house without getting tired, winded and "needing to sit for a break." So, the insurance company cannot tell me that they can distinguish if she "needs" a power wheel chair, they don't know her and definitely don't see her daily struggles.
Taelor just started 6th grade, and with that comes a different teacher/classroom for each period. She has to work to maneuver herself between kids and to each classroom, with little/to no help, except for a select few friends that are willing to help push her.
The financial hardships that a family has to go through for any medical related issue is, more times than not, devastating. We have great jobs and work so hard to make sure that our 4 daughters are taken care of, but expenses such as this, without assistance from insurance, that we literally pay an arm and a leg, it feels like, which could be seen as "not absolutely necessary" would make Taelor's life SO much easier. Between the 5 different doctors she has to see bi-yearly, and the fact that she is a 12 year old pre-teen girl that has enough to worry about and deal with being a pre-teen, along with feeling like a "burden" always needing help - It would be a blessing to allow her to feel like she has the strength and independence that any aging child hopes for.
We are hoping to raise the money to purchase her a power wheel chair that will allow her to be indoor/outdoor, and one that will grow with her and last her for years to come. Any additional funds will be saved and put toward a handicap accessible transportation vehicle.
Now that we've raised enough for her power chair, all donations will go toward getting a wheelchair accessible vehicle to transport Taelor in!!!!!
Your donation would be such a blessing and a glimpse of hope and strength for Taelor. She is such an incredible young lady and never lets her struggles take her beautiful smile from her face. She carries so much at such a young age but has the most amazing soul, kindest heart, and is the strongest person I have ever known.
- Rowan Shelton
- Barbora Sharrock
- Sam Strong
- Barbora Sharrock
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