Originally published in The Weekly Packet, June 20, 2013
Sedgwick family deals with rare spinal cord disease diagnosis
Dalton Hamilton, a 9-year-old from Sedgwick, was recently diagnosed with a rare spinal cord disease.
by Faith DeAmbrose
When you face the reality of a disease that affects only 3 percent of the population it is tough to know where to turn, said Andrea Hamilton. For Hamilton and her family from Sedgwick, that disease is syringomyelia, and after many doctors visits and a trip to a Boston hospital, that was the diagnosis for her 9-year-old son Dalton.
Syringomyelia is a disease of the spinal cord and as a result fluid collects to form a cyst within the spinal cord, which can continue to grow. Its symptoms include muscle weakness and atrophy, loss of reflexes, neck and back stiffness, scoliosis and others as the disease progresses.
Because of the rarity of the disease, Andrea and Dalton Hamilton found themselves at Boston Children’s Hospital June 14 and there they began to get answers. The disease has no cure, said Andrea Hamilton, but there are treatment options.
Hamilton said she first knew something was wrong with Dalton last summer. “He had excessive discomfort, which I thought at first was just growing pains,” she said. But when the pain didn’t subside, x-rays were taken and revealed an abnormality in the lower disks of the spine. Hamilton was referred to an orthopedic doctor and then a neurosurgeon and after a number of x-rays and three MRIs, sent to Boston.
While the family tries to deal with the news, Hamilton, a stay-at-home mother of four, is hard at work doing two things: researching the rare condition and trying to raise funds to deal with the present and future expenses not covered by MaineCare.
Hamilton said that two years ago her now 15-year-old daughter “had a bout with ovarian cancer” and the family was just beginning to emerge from that emotional and financial trauma. “Everything that has hit us recently has been catastrophic and we have been able to deal with it, but Dalton’s [diagnosis] tipped it so that we could not,” said Hamilton, and she says she has no choice but to appeal for help.
Hamilton has set up donation jars at Eggemoggin Country Store, C&G grocery, Northern Bay Market, Bay View take-out, Mikes Market II and Yanni’s. She has planned a bottle drive on Saturday, June 22. Bottles can be dropped off at Northern Bay Market in Penobscot. Bottles can also be picked up by the Hamilton family by calling 326-4088 or 266-7904. In addition, Hamilton expects to hold a yard sale and a benefit supper during the summer. “I am doing whatever I can to raise money,” said Hamilton, “I know that I am asking for help, but I am also willing to do the work.”
A fund has been established to assist the family under the name Dalton Hamilton Donation Fund. Funds can be sent in that name to Camden National Bank, 9 Tenney Hill, P.O. Box 570, Blue Hill, Maine 04614 or dropped off at any Camden Bank location.