Baby Aiden celebrates second birthday
A local baby is beating the odds first given to his parents when he was diagnosed with a debilitating disease at the age of five months.
Dawn and Scott Bundy were told their 5-month-old infant would not live past his second birthday by doctors at Vanderbilt University in 2006. But, little Aiden turned two last week, and his family celebrated with a party in his honor.
"He had a really good birthday," Dawn said. "We had a party, and about 65 people came, including two children living with SMA."
SMA, or spinal muscular atrophy, is a genetic disease where muscles become weak and patients eventually have difficulty breathing.
Dawn said Aiden has lost movement in his entire body, except is fingers and his feet.
"The only parts of his body he can move voluntarily are his fingers and toes. He can wiggle them both," Dawn said.
Initially, the Bundys were told Aiden would only live a few months because of the rapid progression of the disease, and he definitely would not live to see age two.
"We were told to take him home and love him," Dawn said. "We were initially advised not to do anything invasive to sustain his life."
But, the Bundys did not listen to that advice and found another doctor who works with SMA patients.
"It's hard to find a doctor because it's something nobody knows about," Dawn said. "Hospitals don't check for SMA at birth and it's not that well-known by doctors outside the specialty."
Dawn said they were blessed to find a doctor in Birmingham willing to work with Aiden.
Since last summer's update on Aiden, they switched him to a mask ventilator to help breathe better.
"With the ventilator, he can stay off the machine longer than before, and it makes lungs extend more fully," Dawn said.
While the Bundys are celebrating their son's second birthday, they are well aware that the time they have been dreading gets closer with his age.
"The oldest patient with the kind of SMA like Aiden is 12, but they are on tracts," Dawn said. "We have already decided that we are not going to tract Aiden. We will let him go instead."
As Aiden's muscles grow weaker and weaker, the Bundys know that day could come at anytime.
"We are going to love him while he's here until we have to let him go," Dawn said.
While the Bundys are struggling to care for their terminally-ill child, they are working with other families with SMA children to bring awareness to the disease.
The former Congress was trying to pass the SMA Acceleration Act, which provides funding for research and would help bring awareness to the disease to the medical community.
"They were hoping to get it passed before the old Congress went out of office, but now we have a whole new Congress and the learning process starts over again," Dawn said.