Rock the Rose
On November 14th, 2016, after several miscarriages, Heather and Jesse McKee finally welcomed a beautiful baby girl named Ella Rose. With big brown eyes and a head full of dark brown hair, she was exactly what they had hoped and prayed for. Her big brother, Ethan, was in love at first sight.
Ella was growing, as she should, happy and hitting milestones along the way, until over time everything started to feel a little delayed. Ella’s pediatrician was concerned with the fact that she had not hit milestones, at her 2-year checkup, that she should have. Her fine motor skills, along with the inability to stand or walk on her own, prompted testing to be done.
The results they received that following Tuesday, April 16th, were results no parent should ever have to hear. They were told that Ella’s scans had been sent to and reviewed by specialists at several hospitals across the country. It was with utmost certainty that they concluded Ella has a form of Leukodystrophy.
Leukodystrophies are a group of rare, progressive, metabolic, genetic diseases that affect the brain, spinal cord and often the peripheral nerves. There are 50 different types of leukodystrophies. Each type of leukodystrophy is caused by a specific gene abnormality that leads to abnormal development or destruction of the white matter (myelin sheath) of the brain.
In layman’s terms, Ella needs a miracle. She has a genetic disease that is destroying or will destroy the part of her brain that controls function. Her motor skills, speech, hearing, vision, swallowing, etc., will all slowly begin to deteriorate, with the very raw possibility of ultimately taking sweet Ella’s life.
Ella is currently undergoing a barrage of testing to try and determine which specific leukodystrophy she has. Genetic testing could take 2-3 months until the results are in. Depending on the type of leukodystrophy that she has, it could possibly be treated with a bone marrow transplant. At that point it would halt the progression of the disease, should a match be found to perform a successful transplant. There are only a few that can be treated with a transplant; the rest, sadly, have no cure.
Until the results are in as to which type of leukodystrophy Ella has, the future is very much uncertain. Unfortunately, the closest hospital to them to even treat her is 5 hours away. Although they are blessed to have great health insurance, there has already been significant out-of-pocket expenses coming in from all of the testing and ongoing therapies. Heather and Jesse have made the decision to provide Ella with nothing but the best care. It is because of that, they have chosen to have her treated and cared for at CHOP, in Philadelphia. As many know, they currently reside in North Carolina so the travel, and expense, for her care will be extensive.
Heather and Jesse have been faced with the unbearable news of possibly losing their precious daughter. My hope is that you will all join with me, not only in prayer that Ella is miraculously healed, but also in financial assistance for her family. She deserves every last bit of focus from her parents to be on her, without the added stress of medical bills. Every single dollar helps.