Family in anguish over infant's disease.
The following correction was published April 12, 2007:
UXBRIDGE - Matthew Troland, an infant with spinal muscular atrophy, recently began using a feeding tube. Because of a reporter's error, the device was incorrectly reported as a breathing tube in yesterday's Telegram & Gazette.
UXBRIDGE - Angela and Matthew Troland's proudest and happiest day of their lives was the day their son Matthew was born.
"A bouncing baby boy, just what they wanted," said their friend, Michelle Caron of Uxbridge.
Baby Matthew was born Jan. 5, and weighed 9 pounds, 2 ounces. Five weeks later, he was diagnosed with a terminal disease called spinal muscular atrophy, according to family and friends. The disease attacks muscles and the respiratory system.
"The morning of Saturday, Feb. 10, I received a call from Angela," Ms. Caron said. She learned of the diagnosis that day. "Sweet baby Matthew could no longer move his arms or legs. Instead of a happy afternoon of playing with little Matthew as I had hoped for previously that week, I sat and listened to the whole horrible story, doctors and nurses and tests and we cried and we cried. It's the worst feeling in the world to know that this tiny, happy little baby is going to die and there is not medicine or cure that can help him."
Ms. Caron said spinal muscular atrophy is a genetic disease, and in order for a child to be affected, both parents must be carriers of the abnormal gene and both must pass the gene to their child. Approximately one in 6,000 infants are born with the disease and it usually becomes evident in the first six months of life. Ms. Caron said children with the disease are unable to roll or sit unsupported, and the severe muscle weakness eventually causes feeding and breathing problems.
Matthew's parents will have some major medical decisions to make, according to Ms. Caron. In addition to making their recent decision to insert a breathing (SEE CORRECTION) tube, the Trolands will have to decide whether to put their son on a ventilator when he experiences respiratory difficulties. Current statistics show an 8-month average lifespan for a child born with spinal muscular atrophy Type 1 who is not put on a ventilator, according to Ms. Caron. There is an 80 percent chance of dying by the age of 1, and the majority of the others dying by age 2, even when on the ventilator.
Mrs. Troland's maternity leave was supposed to be over at the end of March, but under the circumstances, Ms. Caron said it was not possible.
"Medical bills are piling up already and one income is barely enough to make ends meet," Ms. Caron said. "So, family and friends decided to throw a benefit in hopes to collect money to assist Angela and Matt and baby Matthew through this difficult time."
The Baby Matthew Troland Benefit will be held from 2 to 6 p.m. April 15, at Fifty's Lounge, Route 140, Bellingham. There will be food, music and raffles; donations will be $20 a ticket. Tickets will be available at the door or contact: Gail Johnson at (508) 478-5498 or Lori Johnson at (508) 277-6769.
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|Title Annotation:||LOCAL NEWS|
|Publication:||Telegram & Gazette (Worcester, MA)|
|Date:||Apr 11, 2007|
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