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granme 09-28-2013 06:17 AM

Miracles do happen
20 months ago, my beautiful granddaughter was born. Yes, she had a very red complexion, and within days it was suspected that she had something called sturge weber syndrome. This red birthmark stretched From her upper lip covering both cheeks, both eyes, eyelids, forehead, even stretching up over the top of her head. It also covers a good portion of her left arm and leg and spots on her stomach and back. After several months the diagnosis was confirmed with an MRI that showed the mass inside her skull on both sides of her brain. Also a spot that appeared to be a hole inside her brain. She has the most wonderful personality, she has learned to focus, smile, laugh and recognize on que, but she's such a tiny little thing (in the 20%) and her physical development was slow, still within the normal range but on the slow side. She didn't roll over until after 6 months, crawled at 10 months. At 6 months she appeared to have some very mild "maybe they were seizures" the laser surgery has been very successful. She's had 4 or 5 treatments and her face is mostly clear. She has a bit of a red nose, and what appears to be a small rash on one cheek. But the thing is, the seizures haven't gotten any worse, and although she was slow in certain milestones, once she figured them out, she's taken off running. Now listen to this.. No lie, she had her second year MRI, and it's gone. All leptomeningeal angiomas are gone, the hole in her brain, gone too, the MRI shows nothing of concern. Although she retains the diagnosis because of the skin and eye conditions, the neurologist gives her a prognosis of 0-5% concern for stroke, serious seizures, brain death, etc. the neurologist wants to have another MRI in 2 years to confirm it's gone..... Can anyone say miracle? I can.

missy 09-28-2013 05:09 PM

Wow. Just wow.

I can't get over how awesome that is! What an inspiration!

Keep us updated and let us know how things go with her.


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