Hudson - Litchfield News 8 - July 29, 2011
Conquering Chiari One Step at a Time
submitted by Susan, Shon, Justin, and Matthew Haley
Our youngest son Matthew, who is now 4 1/2
years old, suffers from an incurable disease called Arnold Chiari Malformation. He had experienced issues from birth and had gone undiagnosed until his symptoms became life-threatening in May 2008. He subsequently underwent emergency brain surgery on May 17, 2008, and was the
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youngest Chiari patient to undergo this type of invasive surgery at the Children’s Hospital in Boston, MA, where they removed his C1 and partial C2 vertebrae, a half-dollar-size portion of his skull. The neurosurgeons opened the outer protective layer of his brain (the dura) and removed the portion of his cerebellum that was wrapped around and strangling his brain stem and herniated down to his C2 vertebrae in his spine. Had we not brought him back to the Emergency Room when we did, our son would no longer be with us, and his cause of death would have been listed as Sudden Infant Death Syndrome (SIDS). We are happy to say that he has recovered well from the surgery, but continues to show signs and complains of pain in his head, neck, legs, and arms. He also suffers from Myoclonic Astatic Epilepsy (MAE) due to the brain trauma he suffered. With every growth spurt Matthew goes through, his symptoms become more evident and he has never fully recovered his ability to eat and drink certain foods without aspirating into his lungs.
Matthew will also require additional decompression surgery in the near future, as the bone they removed has continued to grow back and his skull has not kept up with the growth of his brain. He now has no space left at the base of his brain with the protective Cerebral Spinal Fluid (CSF) required to protect his brain. Every growth spurt he goes through is causing increased
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Robinson Pond Kiosk Repaired
submitted by Margaret Femia, Friends of Robinson Pond The kiosk at the Robinson Pond boat area was recently repaired, thanks to a donation by Granite State Glass in Hudson. The kiosk contains information on boating, invasive weed identification, and other pond-related materials. It is maintained by the Friends of Robinson Pond.
pressure in his head and herniation of his brain into his spinal column, again causing a lot of pain and many other symptoms associated with Chiari. In 2010, President Obama signed legislation to include Chiari Malformation as part of the National Institute of Neurological Disorders and Strokes (NINDS). The goals of this research are to increase scientific understanding of Chiari and to find ways to prevent, treat, and, ultimately, cure them. Currently, this serious neurological disorder has very little funding other than what other fellow ‘Chiarians’ and families of those who suffer from Chiari raise. It is our hope that our son has a better future and doctors have better means to treat him by raising money to help find a cure for this horrible disease. It is the most heart- wrenching experience to see your child suffering and going through this and know that there is nothing we can do to help him. Most doctors and neurologists have never even heard of Chiari. We need to change this and we need your help to raise awareness and funding for the much-needed research. With the help of the New Hampshire
Governor’s office, we have applied to have the month of September 2011 be New Hampshire’s Chiari Awareness Month. On September 17, we will be partnering with an organization called Conquer Chiari in a Walk Across America and for the third year we are organizing the walk, but will host it at the Pheasant Lane Mall (Food Court) in Nashua. Little is known about Chiari Malformation, thus there is no cure. Valuable research needs to be conducted to give everyone a fighting chance at a better life. We only get one chance at life. Isn’t it worth fighting for? Please consider sponsoring Matthew for the September 17 Conquer Chiari Walk Across America in Nashua. Everyone is invited to participate. A minimum donation of $25 is suggested. Participants are asked to pre-register online at www.conquerchiari.org
. T-shirts will be provided to those who pre-register by August 7 and contribute at least $25.
Donations can be made online at www. conquerchiari.org/ccwaa10/MatthewHaley
or can be mailed to: Susan Haley, 60 Pilgrim Drive, Litchfield, NH 03052. Checks should be made payable to C&S Patient Education Foundation. No amount is too small and will contribute to important research to find the cause and ultimate cure for this horrible disease. Your donations are 100-percent tax-deductible and all donations will go directly to Conquer Chiari to support research. Any support would be greatly appreciated. For more information, to register as a walker, or to sponsor a walker, contact Susan Haley at 882-0448 or (617) 823-3462, e-mail susan. firstname.lastname@example.org
, or visit www.co
Hudson’s Old Home Days Buckle your seat belt and head on down to
Old Home Days! That’s where you’ll find food, fun, games, vendors, exhibits, live entertainment and awesome rides! It’s old-fashioned family fun for all ages!
Thursday & Friday 5:00 – 10:00 p.m. Saturday – 10:00 a.m. – 10:00 p.m. Sunday – 11:00 a.m. – 5:00 p.m.
Ride ‘Em All! Kids rides • Merry-go-round
Haunted house • Zipper • Tilt-a-whirl Round up • Giant slide • & Much more
More than 50 rides, games & attractions
Free admission Only $2.00 donation to park
Hudson Old Home Days Alvirne Hills House Route 102 Derry Road
For more information, call 880-2020 Thanks to our Old Home Days supporters Hudson Historical Society
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