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Thread: BCH

  1. #1
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    We spent the day Saturday at Boston Children's Hospital for a Moyamoya Family Symposium. It was a fun and informative day. We had a chance to chat with other Moyamoya families and Kathleen's neurosurgeon who literally saved her life 13 years ago. He's an amazing person who has set a standard that's been hard to follow for the rest of Kathleen's Dr.'s. Still after 13 years I can email him a question and he gets back to me within hours. He remember our family even with all thee patients he sees. We learned of some great Moyamoya research going on and stroke recovery trials that may be coming up. we left our contact information with a neurologist who is hoping to get a trial going for transcranial magnetic stimultion. Below is a picture of Kathleen and I with Dr. Scott (her neurosurgeon) and other moyamoya patients.P1010819.jpgP1010821.jpg

    Mary Grace

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    Distinguished Community Member andromeda31's Avatar
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    Hi Mary Grace!

    That sounds like a great day! That is neat to be able to run into a doctor who has played an important part in Kathleen's life, he looks like a kind person from the picture...great pictures!! Hope you have luck with maybe getting into a trial....

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Mary Grace)))))) ~

    What a great event, and how wonderful that you and Kathleen were able to meet up with Dr. Scott. I agree with Lisa ~ he does have a very kind face and aura. Best of luck in being chosen for the transcranial magnetic stimulation trial!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Thanks Lisa and Rose, I'm keeping my fingers crossed about the trial. Dr. Scott is the kindest Dr. we've met and we've me a few LOL. He took such good care of our family when we were at BCH for 2 weeks and away from home. He was at her bedside at 6 AM and sometimes at 10 pm in the same day. He sill answers my emails within HOURS I'm not even exaggerating.
    Mary Grace

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