Memorial run for toddler who died from rare disorder

Losing a child is something no parent should ever have to go through.

But when it happened to one family in Howard County, they decided to do something about it.

Baby Ilan was a dream come true. He was the first born for Mousumi Bose and her husband Andrew Betzer.

He was the first grandchild in the family, the first baby to steal their breath away.

But when Mousumi was pregnant with Ilan, doctors noticed something wasn't right.

"About 36 weeks, I was told the baby was not growing as well as he should have been so they said they were going to wait 2 weeks and if he still wasn't where they wanted him to be then they would induce."

Doctors did induce and when Ilan was born, he wasn't responding the way a normal baby should.

Mousumi says, "They took him to the NICU, a few hours later, a doctor came and basically just told us there's something wrong."

After a number of tests, Ilan was diagnosed with a rare and untreatable disorder called peroxisomal biogenesis disorder or PBD. It affects the brain, liver, and kidneys and there is no cure.

For 14 months, his parents did the best they could to keep him comfortable, holding him, reading to him, and playing him lots of music.

Ilan died shortly after his first birthday, a milestone his family will cherish forever.

Because the disorder is so rare, not a lot of research has been done. That's why Mousumi and her husband are organizing the first ever Ilan-a-thon memorial 5k run and walk. It'll be on April 21st at Patterson Park.

Money raised will support the Global Foundation for Peroxisomal Disorders, an organization aimed at raising awareness for PBD.

Mousumi and her husband were blessed another child, Etash, who was born shortly after Ilan died. A blessing this family cherishes with every once of their heart.

You can register for the race at http://www.ilanathon.org. 

Print this article Back to Top

Comments