|She is beating the odds of SMA|
Sunday, September 23, 2012
By ASHLEY JACKSON - Bulletin Staff Writer
Madison Woodard is beating the odds, one day at a time.On Sept. 27, 2010, the Martinsville child was diagnosed with a rare disease known as spinal muscular atrophy (SMA), a terminal disease in which 90 percent of children it affects do not live to their second birthday.
When Madison turned 2 on May 5, her family celebrated with a big birthday party.Madison has type one SMA, which is the most severe form. SMA is a motor neuron disease that affects all of the muscles in the body, eliminating the ability to crawl, walk, swallow or control head movements, according to Madison’s mother, Amanda Woodard.
Over the past two years, the family has had two scares with Madison. One time she “coded” — experienced a life-threatening event — and the other time she stopped breathing due to a mucus plug caught in her airway, Amanda Woodard said.Madison was born with the disease, but it wasn’t until she was four months old that Amanda and her husband, B.J. Woodard, realized that something wasn’t right, she said. Madison couldn’t hold her head up and wasn’t moving her legs.
After tests were run, Madison tested positive for SMA, she added.When Amanda heard the news, “my heart broke. It was very painful,” she said, holding back tears.
Doctors didn’t tell her much about the disease, so Amanda did research online. She was devastated as she read about the severity of the disease and that most children don’t live past their second birthday, she said.At the time, Amanda didn’t know that there were options for treatment. Once family members found out about the diagnosis, her aunt in Roanoke told Amanda about a family she knew whose daughter also had SMA and was coping with various treatments, she said.
The month after the diagnosis, the Woodards met that Roanoke family, James and Jennifer Garner, who let them know of their options. “They were a life saver,” she said.There are three treatment options available: evasive, which is when the child has a tracheotomy; non-evasive, in which the child uses a BiPAP device to make breathing easier; or palliative care, which involves making the child comfortable and letting the disease run its natural course, Amanda said.
The Garners were using the non-evasive method for their 3-year-old daughter, which is what the Woodards chose for Madison, she said.The Garner family operates the Addy Grace Foundation, which works to help families of children with SMA emotionally, financially and mentally, she added.
“I don’t feel my child would be here today” if it wasn’t for the Garners and other families she keeps in contact with through an online registry called Families of SMA. Each family gives advice and tells her what treatments work, she said.Madison requires 24-hour care, including three treatments a day lasting more than an hour. The treatment involves wrapping a vest around Madison and placing a wedge underneath her that gently shakes her for 20 minutes to loosen any secretions inside of her lungs, Amanda said.
Madison is not able to cough or swallow, so her family also has to use a cough-assist machine to pull all the secretions from her lungs and use a suction tube to remove them.Throughout the day, Madison is hooked to a BiPAP machine that helps her to breathe so her body is not overworked trying to breathe on her own, though the machine doesn’t breathe for her, Amanda said. Since Madison can’t swallow, the only way she can get the nutrients that she needs is through a feeding tube.
Amanda carries a pulse oximeter that monitors Madison’s oxygen and heart rate so that if her levels drop, Amanda knows right away.Doctors have told the Woodards that Madison, their only child, was born with the disease and it is genetic. Amanda and her husband have since found out that one of her parents and one of his parents had the gene for SMA, which was passed on to them, she said.
“We didn’t know we were carriers,” Amanda added.Because both Amanda and B.J. carry the gene, doctors have told them that there is a 25 percent chance that every child they have will have SMA, she said.
One in every 40 people carry the gene that causes SMA and one in every 6,000 babies is born with SMA, according to the Families of SMA website.At first, Amanda was scared at the thought of trying to have more children, but now she feels differently. “We’re going to leave it in God’s hands,” and if another child is born with SMA, then that’s fine, she said.
“Would I change Madison? ... No. Madison is my miracle child and I wouldn’t change her for anything in this world,” Amanda said, adding that she had been told that she couldn’t have children before she became pregnant with Madison.Living with Madison’s disease “is an every day emotional ride” which also has hurt the couple financially, Amanda said.
Most of Madison’s doctors are out of state and her Medicaid doesn’t cover out of state costs, so the family has to pay those expenses out of pocket, she said.The Woodards have held fundraisers over the past two years to help pay for Madison’s medical costs for. Next month, they will begin making and selling apple butter.
The family wants to raise money to buy a lift for their van or to buy a handicap-accessible van so they can take Madison outside of the home to help her to be a normal 2 year old, Amanda said.The family will be selling apple butter for $7 for a pint jar and $4 for a half-pint jar. To donate to the family, e-mail Madison's mom, Amanda, at firstname.lastname@example.org