The doctors' tried her on two different migraine preventatives and had countless vials of blood drawn in the hopes of figuring out what was wrong. Elizabeth went to the pediatrician, neurologist, allergist, gastroenterologist and finally the ENT. The ENT ordered a CT Scan in June which found a cyst. Our whole family was panicking!
They immediately went from the ENT to the neurologist, who said the cyst was nothing to worry about. They KNEW something wasn’t right and insisted they check again. Elizabeth had an MRI scheduled where the team saw something unusual and they sent her for an MRA (Magnetic Resonance Angiogram). The next morning they went the neurosurgeon who told them that Elizabeth has Moyamoya Disease.
***Moyamoya Disease is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia.
This is essentially a malformation or blockage of the carotid artery.
The neurosurgeon gave them some information and sent them back to the neurologist immediately for more tests. They were still very confused. The doctor sat them down and said that the disease was extremely progressed and was much worse than a cyst. They went from spending years prodding, questioning doctors’ and worrying about Elizabeth’s food intake to being told she would need surgeries on both sides of her brain to avoid significant and deadly strokes.
They will be forever grateful to her ENT, pediatrician, neurologist and neurosurgeon both in Columbus, GA and Atlanta, GA. This disease is difficult to diagnose prior to strokes. In addition, Elizabeth does not fit the “normal” demographic of someone who is diagnosed with Moyamoya Disease. Her chances of having Moyamoya are one in one-million. We are confident that God has handled Elizabeth’s illness as He always does, putting the right people (her doctors) in the right places and at the right time.
After much prayer, research and tears we have decided that Elizabeth receiving her surgeries at the Moyamoya Clinic at Stanford is the best route for her. They have completed over 1600 surgeries with a 95% success rate. Elizabeth is a normal nine-year-old who wants to live a normal life, go to school, grow up, get married and have a family. We believe Stanford is best equipped to give her all of those things.
Making the decision for her to be treated at Stanford has been a huge leap of faith. In addition to the typical fears they must now add traveling to California. This means there will be the cost of the medical bills, travel, lodging (although they do hope to stay at the Ronald McDonald House) meals and all other misc costs that you have when you are out of town and when your loved one is receiving medical treatment.
Elizabeth is scheduled to for her first appointment on November 3, 2017 and her last, provided there are no setbacks, November 24th. They are still waiting on final approvals from the insurance company.
Anyone who knows my sister and her family knows they are absolutely, unequivocally honest. Should there be any money that is not used for medical bills, travel, lodge and meals during Elizabeth’s treatment, it will be donated to the Ronald McDonald House in Atlanta, Georgia.
Please know that we all need prayer as well as financial support. We are grateful for every bit of help we are, or will, receive-whether through prayer, financial assistance, or assistance at home.
They have been overcome with gratitude in the outpouring of love they have been shown. Thank you and God Bless!
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