This week every year is PHACE awareness week.
Miss Aaliyah has PHACE Syndrome. She also has Moyamoya disease which is a vascular disease secondary to her Moyamoya.
In order to spread awareness here is what she has endured.
She has a large hemageoma over her left eye. She also has one eye smaller than the other which years ago needed surgery due to it being a weak eye and crosses. Despite the surgery she still needed eye drops to blurr her vision of her right eye to strengthen the left. Her vision greatly improved by doing this and now has 20/40 corrected vision in that eye. A couple years ago she had brain surgery to graft an artery on her left side of the brain.
She had 7 laser treatments to her hemageoma to try to reduce it. It is still visible but faded.
Her tests she's had are two angiograms to her brain. One before surgery to confirm the Moyamoya and one a year later to see the progress of her increased blood flow. She now gets yearly MRI/MRAs to check her blood flow to her brain and assure the flow continues to improve. She's down to annual eye exams, and neurology exams.
The doctor told us perhaps two more lasers would improve her hemageomas but right now she doesn't want them so I will wait on that for a bit, As she gets older she will wear a bit of makeup to cover them. I'm an anti makeup person but she deserves to use it if she wants to to help boost esteem. I plan to find a make professional when we beleive she's old enough to wear it because if I help her...quite frankly I will make her look like a clown.
She acts and talks like any other 9 year old. She loves to run, play and get into mischief. One would never know she has something so involved. That's the way she likes it.....being a normal kid!
After one of her laser surgeries.
The day after her eye surgery. Face is swollen.
Her cute dimples!
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