Audio clip
Paul Knowles
Early one Sunday morning in mid-November, 23-month-old MaKyla lay in her parent's bed, appearing wide-eyed and fearful and unable to control her right arm.
Her mother, East Ridge resident Monica Boggus, immediately knew something was wrong.
"She was just looking at me and her arm was just twitching. I sat her up and her arm would just flop," recalled Mrs. Boggus.
Mrs. Boggus, 39, and her husband, Michael, rushed MaKyla to the emergency room at T.C. Thompson Children's Hospital. The parents couldn't believe it when doctors said their toddler was having a stroke.
"Every parent thinks about chickenpox, mumps, measles, childhood diseases. But no parent expects a stroke, especially with a 23-month-old child," she said.
MaKyla was diagnosed with moyamoya disease, a rare vascular condition of the brain for which the first symptom often is a stroke.
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Staff Photo by Lesley Onstott MaKyla Boggus, left, works with Robin Wolfe, a pre-school special needs teacher at Eastside Elementary School, on weekly exercises under the observance of MaKyla's parents Michael and Monica. MaKyla suffered a stroke, likely related to her Down syndrome and will be traveling to Boston to be treated for the rare moyamoya disease.
Moyamoya is more common among people of Asian ancestry, but other risk factors include Down syndrome, with which MaKyla has been diagnosed.
In Japan, where moyamoya first was identified in the 1960s, the disease shows up in about 3 cases per 100,000 people, while in the United States estimates are closer to 0.086 case for every 100,000 people, according to research published in the journal Neurology in 2005.
The condition occurs when the major blood vessels to the brain are narrowed or blocked. Smaller vessels must take up the job of getting blood to the brain, but the blood flow is precarious and can put the patients at risk of multiple strokes, said Dr. Paul Knowles, pediatric neurologist at T.C. Thompson.
ABOUT MOYAMOYA DISEASE
Moyamoya disease is a rare, progressive, cerebrovascular disorder caused by blocked or narrowed arteries at the base of the brain. A tangle of tiny vessels form to compensate for the blockage, but patients are at high risk for repeated strokes, which can result in speech and vision deficits, sensory and cognitive impairments and involuntary movements.
Moyamoya, first described in patients in Japan in the 1960s, is Japanese for "puff of smoke" because of the cloud-like appearance of those small blood vessels on an old-fashioned angiogram brain scan. Because it tends to run in families, researchers think the disease is the result of inherited genetic abnormalities.
Source: National Institute of Neurological Disorders and Stroke; Dr. Paul Knowles
He diagnosed MaKyla's condition, which can be fatal if untreated.
Surgery to bypass blocked arteries or open narrow blood vessels can stop the strokes, and next week MaKyla is scheduled for a consultation and surgery at Children's Hospital Boston. It's one of the few hospitals in the country whose specialists can perform surgery on children with the disease, Dr. Knowles said.
Last week, local fundraisers raised $1,000 in just three days to help the family afford plane tickets and travel expenses for the trip, said Bobby Paris, president of the West Side Neighborhood Association and a community advocate.
Mrs. Boggus, a provider outreach specialist with BlueCross BlueShield of Tennessee, said the family would struggle to afford the trip otherwise.
"It's wonderful," she said. "The community has stepped up and helped us out tremendously. We couldn't have done it without them."
Health care reporter Emily Bregel has worked at the Chattanooga Times Free Press since July 2006. She previously covered banking and wrote for the Life section. Emily, a native of Baltimore, Md., earned a bachelor’s degree in American Studies from Columbia University. She received a first-place award for feature writing from the East Tennessee Society of Professional Journalists’ Golden Press Card Contest for a 2009 article about a boy with a congenital heart defect. She ...
This is so sad :(
Almost a year later by the Grace of God, she is doing fine. No strokes since surgery. And will soon celebrate her 3rd birthday. Thanks Chattanooga for all your love and support.
MaKyla's Mom
I suppose that Moyamoya was given to her by the "Grace of God".
Thankfully the medical science was there to help her.
Yes, I believe in the Grace of God. and I believe that everything happens for a reason. My child is a testimony of that belief. Everday she wakes up. Everytime she smiles. There are some that at the thought of not having the "perfect child" they run to the abortion clinic to kill these beautiful babies before they are born. God made her in his image like he did all things. she has a joy of life and can move and run and laugh and play like other kids. I have no doubt that the Grace of God is present. why he allowed this to happen I don't know. Maybe it was to let "YOU" know that he has Grace.... even for you.
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