We are hosting a fundraiser in honor of the girls' 8th birthday, because we want to help Boston Children’s continue its amazing work for kids like Carolyn. 

Carolyn was diagnosed with Moyamoya disease in April of this year after several frightening weeks of progressive left sided weakness and a decreased ability to perform daily activities such as holding a pencil, using a utensil, tying her shoes, zipping zippers, walking up and down the stairs, and maintaining her balance among other things.  Carolyn even switched her hand dominance for a these few weeks, which is NOT normal for a child like Carolyn. Her identical twin sister Laura, was tested for this disease in June and we are thrilled to say that she does not show any signs of Moyamoya.  This seems miraculous to us because it is reported that up to 80% of identical twins share this disease.  

Moyamoya is a rare progressive neurovascular disease without a cure.  It attacks the internal carotid arteries in one or both hemispheres of the brain.  These arteries are the main blood supply route to the brain.  Over time, the interior walls of the arteries become thickened and narrowed which leads to decreased blood flow to the brain as well as up to a 90% chance of stroke over time. Stroke leads to disability in almost any functional skill that you can think of!  The only treatment is a blood thinner, appropriate hydration and eventual brain surgery which seeks to bypass the major arteries of the brain. We are so very lucky that Carolyn's diagnosis was made in the early phases and she is left without neurological damage and disabilty.  She underwent both of her brain surgeries at the end of June and is recovering very well.

Her surgeon, Dr. Smith, is a pioneer in the area of moyamoya research.  He is one of the only neurosurgeons in the country to perform an indirect bypass called a pial synangiosis.  As I mentioned earlier, Moyamoya is a very rare disease, so rare that I had never heard of it and I've worked as an occupational therapist in the area of pediatric and adult neurorehabilitation for more than 20 years. This research needs funding. Dr. Smith is examining early detection methods such as markers in a urinalysis that could point to this diagnosis. This early detection is KEY to preventing life long disability in children as well as adults. Dr. Smith is also looking at possible treatment methods beyond surgery which could be important for children like Carolyn in the future. 

100% of your donation will go to Dr. Smith's research.  We appreciate you coming to our page and considering making a donation to help children like Carolyn stay as healthy as possible.

Please support our fundraiser—and Boston Children’s Hospital. 

Sincerely,

Kristen, Jeffrey, Emma, Laura, & Carolyn Milks