Ilan Stanley Betzer, born Aug. 18, 2010, was a serene baby boy who “loved to be held” and had a special affinity for music.
“We had music playing all the time,” said Mousumi Bose, his mother.
A spectrum disorder called Peroxisomal Biogenesis Disorder took Ilan from this world two months after his first birthday.
“He just dealt with it, and he dealt with it with grace,” said Bose. “I’m just glad I had a chance to be his mom.”
There is little research on the disorder, which affects about 1 in 50,000 children, many of whom don’t make it past their first year of life.
Peroxisomes are necessary for development; born without the correct peroxisomal activity, Ilan couldn’t eat or breathe on his own, and his muscles were weak. At home, he breathed through a tracheostomy and ate through a tube in his stomach while medications controlled his seizures.
“I can’t explain the feeling you get when you give birth to a child and they tell you that he won’t live to see age 1 and there’s nothing they can do about it,” said Bose. “Nothing—not, ‘oh, there’s some very risky surgery’—nothing.”
Bose wants to change that, and her first major step has been organizing a charity 5-kilometer race to be held in Patterson Park on Sunday, April 21.
“I used to do charity 5K’s before my kids,” she said. “When Ilan passed away, I needed to do something; this race thing is kind of my method of coping.”
Bose notes that that “on the extreme end of things,” her morale is very closely connected to the status of the race preparations.
With well over 200 participants registered so far, the venture seems to be shaping up very well.
After paying for the race, 100 percent of proceeds will go to the Global Foundation for Peroxisomal Disorders. Bose says that the nonprofit has two arms.
The first is providing support to families affected by PBD. The GFPD provides both moral and material support, including medical supplies and equipment, through an exchange.
“A lot of these kids that make it past the first year need a lot of equipment to survive,” said Bose, noting that walkers and wheelchairs are in high demand.
The other arm of the GFPD is involved in funding research of PBD.
“When an infant is diagnosed, parents are basically being told, ‘You just live life with them, and then they’re going to die,” Bose said. “I feel that there must be something that can be done about it.”
In addition to Ilan, the race will honor T.J. Sacra, a boy born with Zellweger Syndrome, a disorder within the BPD spectrum. Born in 2000 in Tacoma Park, T.J. is now 12 and lives in South Carolina.
“Our family and T.J. have come a long way from the horrible day when we received the devastating news that our son had a PBD,” wrote T.J.’s parents, Ted and Katie Sacra, on the race Web site. “At the time, we were immersed in a new and scary life instantly. We struggled in every way possible while we tried to do everything we could for our son. There was no support, and other than our geneticist, none of his doctors had ever treated a child with this disorder or had even heard of it.”
Today, T.J. attends middle school with the help of a one-on-one aid. Though “he has had to endure the multiple impacts” of PBD, he has survived far longer than many with PBD do.
In addition to T.J. and his family, other parents and children affected by PBD will be coming to the race from New York, North Carolina, and other states.
Bose, who spent her early life in downtown Baltimore and now has a friend who lives on Ellwood Ave., said that Patterson Park seemed a natural place to hold the race.
“I’ve seen the revitalization of Patterson Park, and it has made me very happy,” she said. “I reached out to [Baltimore City] Recreation and Parks, and they responded immediately. It just worked out really, really well. They were sympathetic to my cause.”
The race—named the Ilanathon—is Sunday, April 21, at 9 a.m. It starts and finishes at the Pulaski Memorial in Patterson Park, at the corner of Linwood and Eastern avenues. Race-day registration is at 8 a.m. Alternatively, entrants may register online at www.eventbee.com/v/ilanathon2013. Pre-race packet pick-up and check-in is Saturday, April 20, at Dun Dealgan Irish Pub, 7100 Sollers Point Rd., Dundalk. The race stays entirely within the park.
Read more about Ilan, T.J., BPD, and the race at www.ilanathon.org.
by Erik Zygmont