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My daughter’s diagnosis has had a devastating effect on her and our whole family – her life will never be "normal" – she has residual neurological deficits and some facial deformity from cranial nerve damage causing paralysis on the right side of her face. She just turned 5 years old and in the past over the last 2 and 1/2 years she has been under anesthesia 19 times. She has had 4 separate surgeries including 3 brain surgeries and has a total of 12 scars to show for it.
Jocelyn has now officially lost vision in her right eye will continue to have surgeries to try and regain some function or if nothing else, help her cosmetically. My little girl is strong and she constantly amazes me by how determined she is to do things that her friends can do. She continues to work very hard with physical and occupational therapists to help with her persisting motor deficits.
Jocelyn has multiple tumors throughout her brain called Angiomas. They grow, and bleed causing strokes; as a result the deficits caused by a hemorrhage are for the most part are permanent. Some may fade as the blood reabsorbs but the more they bleed the more permanent and debilitating the deficits become, in some cases a bleed can be deadly. We have no current treatment except to wait for them to bleed and cause enough damage to the person that the damages outweigh the risks of brain surgery.
My little girl was unable to speak, swallow, walk or even stand on her own as a result of a hemorrhage located in her Brain Stem. Due to how dangerous the location of this particular Angioma - we had to travel across the country to find a doctor willing and able to do the surgery. Her previous Neurosurgeon’s recommendation was to “take her home and enjoy her”. We had that one successfully removed with minimal damages. Unfortunately, her most recent MRI has revealed that a new one has grown in its place and is already active. Just when you think you are out of the woods...
We have been crushed by this latest news as this particular location houses the controls for all basic life functions, breathing, heart rate, central nervous system, the nerves that go to your entire body passes through this tiny area to get from your brain to your body; any small amount of blood can cause immediate and extremely dangerous affects including death. Every day I am scared for my child, but we continue to live every day as best we can. I hope one day I will not have to worry anymore, and I hope you will help me realize this dream.
As you can see in Joce's case of this disease, it can be aggressive and cause major disabilities. Depending on location, bleeding and growth rate, these legions can have devastating effects. Most doctors have heard of the disease but do not know nearly enough about it. The Angioma Alliance has partnered with doctors across the United States and Overseas in hopes of a cure.
Please donate to the Angioma Alliance in Joce's name - whatever you can $1, $5, $10 anything...we need more research, more awareness, we need medicine, we need a cure... I need Jocelyn. Please help!