Bone marrow drive for Brooklyn boy with rare disease

June 27, 2011 3:18:19 PM PDT
A Brooklyn community is coming together to help a child suffering from a rare disease.

6-year-old Aidan Seeger loves listening to music, riding his scooter and crunching the numbers.

"My favorite number is 5095," Aidan Seeger said.

The first grader is in the fight for his life and his parents don't know how to tell him.

"We're trying to capture every moment because we don't know if it's the last one," said Bob Seeger Junior, Aidan's dad.

Aidan has ALD, a rare and rapid moving brain disorder that destroys nerve cells. Most times it leads to a coma and eventually death.

Aidan's teacher noticed he was holding his books really close to his face when he was reading. She told the 6 year old's parents to have it checked out. Doctors diagnosed him with the life threatening disease two weeks ago.

"I just stood in the street and cried because that's my body's reaction. I'm thinking my little baby blue eyed boy that's not going to see is he going to be here today or tomorrow?" Seeger said.

"We need four samples from you. Top bottom, bottom top. You're going to scrub for 10 seconds like you're brushing your teeth"- this was the instruction given to Aidan's potential life savers.

P.S. 154 held a bone-marrow drive at his school in Windsor Terrace this afternoon. They tested and registered dozens of people. They're hoping and praying for a match for Aidan and others like him. Sadly, Aidan's 4 year old sister Sienna is not compatible.

A University of Minnesota doctor agreed to do an experimental treatment that would include chemotherapy, radiation and hopefully a bone-marrow transplant

"I've seen a lot of people coming and going. It gives me goose bumps. It's a great turnout", said Melissa Fletcher, a potential donor.

"They're here. They're opening up their hearts. There are people who blow me away," Seeger said.

Aidan's parents took a last minute trip to Disney world and are doing just about everything Aidan can dream of. They don't how long they have so they're making the most of their time together.