Parents Fight To Save Children
Having recently been dealt a devastating blow that two of their three children suffer a genetic disease, Jamie and Winter Troia have only just begun what will be an ongoing physical, mental and financial battle to save their family.
Parents to 7-year-old Jozalyn, 2-year-old Corbin and Alyssa, soon-to-be 6 months, the Troia family from McConnellsburg received the news in early October that their youngest two children suffer from metachromatic leukodystrophy, more commonly known as MLD.
A slow breakdown between the nerves and the brain, symptoms of MLD can be exhibited early on in infants and toddlers through delayed walking and speech. While there is no reported cure, if left untreated, the genetic disease can evolve into paralysis, blindness, seizures and eventual death.
Winter told the “News” she began posing questions to her pediatrician regarding her son’s inability to walk in the spring of 2010. Passed off by doctors as being overly paranoid, the Troias noticed their son cried periodically through the night and eventually went cross-eyed. Having switched physicians several times, Corbin was misdiagnosed before he received a proper diagnosis of MLD. Being genetic in nature, additional testing revealed younger sister Alyssa also suffered from the disease.
According to the mother, the possibility exists that if Corbin had been properly been diagnosed in May, he could have received a transplant the following month that would have saved his life. Unfortunately, due to the progression of the disease, the possibility of Corbin now surviving a transplant is only 20 percent. In the event he would survive, he would live the remainder of his life as a paraplegic.
Unwilling to sacrifice the quality of their son’s life, the Troias have made the difficult decision to allow Corbin to live out his final years without treatment. Winter said it could be as soon as one year until Corbin loses control over his arms and legs. The 2-year-old primarily crawls to get himself from spot to spot at this time and was being fitted for leg braces last Wednesday.
The majority of children diagnosed with MLD only live until they are 5 or 6 years old.
“I don’t want him to suffer. I want him to live a quality life,” said Winter. “ ... I often pray that the doctors are wrong like they were the first time they diagnosed him.”
Unfortunately for Winter Troia, she will likely miss out on the many special moments that will occur during this next critical year. She won’t be there to tuck her son in at night, hold him in her arms or even take him to his multitude of therapy appointments. She will also miss out on school functions, class parties and checking homework assignments nightly with her eldest daughter, Jozalyn.
Instead, Winter will be leaving her family behind to travel to Duke University in North Carolina to stay with Alyssa, who will begin extensive testing on December 1. Chemotherapy will begin shortly afterwards to revamp the baby’s immune system, and eventually a transplant will be performed to replace the genes responsible for the disease.
The MLD Foundation reports treatments that are the most effective at slowing down the disease in individuals not exhibiting significant symptoms are bone marrow and stem-cell transplants. Research is also making great strides forward in the areas of improved bone marrow transplants, enzyme replacement therapy, gene therapy and cell line studies, the Foundation said.
Due to the high risk of infection, Winter and Alyssa will have to visit the hospital in North Car- olina daily for checkups following a six-week stay. As a result, they are required to reside within 10- minutes of the hospital that translates into a $1,500 monthly housing rental for the Troias, who are already facing mounting hospital and related expenses. The process could take between 6 and 12 months until the Troia family can be permanently reunited.
Winter shared that her position as a phlebotomist will be held for six months. She will retain her health insurance through that time, but due to the additional time she may have to stay in North Carolina, she could return to Pennsylvania without the means to help care for her family. In the meantime, Jamie is employed with Ramego Construction and will be caring for Jozalyn and Corbin with assistance from family and friends.
Being a typical mother, she said she knows without a doubt that while she is away, she will be worrying extensively about things at home, such as whether there are groceries in the refrigerator, if her daughter has a lunch packed for school or if the bills have been paid.
Winter said the response and financial support from the community has been overwhelming, and she’s unable to thank local residents enough. A spaghetti dinner recently held locally was well received, and another dinner is being organized for January 15 in Williamsport, Md., to benefit the children. More details will follow.
In addition, a special account has been established through Tower Bank to help the family through this trying time. Anyone wishing to make a contribution can do so with a check payable to Winter Troia-Benefit of Corbin and Alyssa Troia.
Winter said her number one priority at this time is saving her little girl’s life even though the medical bills and the family’s expenses are always on her mind. It’s a tough choice, she said, when deciding whether to cover rent in North Carolina or pay for a past $6,000 MRI bill and $1,900 leg braces.
“We’re doing it one day at a time and with lots and lots of prayers,” said Winter.
Getting their message out to the public is also a high priority for the Troia family. “We want people to know our story so they can look for the signs,” she concluded.