Local Family Soldiers On, Despite Son’s Extremely Rare Condition

By Chris Lundy

It's a tough time to make donations. So when gifts do come through, they are more welcome than ever.

And that's why the family of a local boy – Brandon Blair of Beachwood – was so grateful for a recent donation.

Brandon relies on others for all his basic needs. There were only three other children in the world with his condition when he was born. The condition is so rare there are no charitable foundations set up. He is ineligible for Social Security, disability Medicaid or Medicare until he turns 18.

Brandon's plight came to the attention of Jim Rawls, plant manager for Forked River Power.

It's a little-known company located on many acres behind the Oyster Creek Nuclear Generating Station in Lacey. The plant converts natural gas to electricity, which feeds into the grid. It also supplies back-up to Oyster Creek in the event of an outage.

Rawls said he heard when he heard of Brandon's needs, he brought it to the attention of his bosses. Every year, there's money put in the company budget to help out with a local fundraiser, like a Little League.

"In this economy, we're especially fortunate to be able to donate," he said.

Brandon's plight touched the hearts of people who worked there. Being able to make a donation in this day and age made corporate sponsorship more rewarding than ever before.

To help with Brandon's nearly constant medical issues, a group of family and friends hold golf outings, and every year petition local businesses to become sponsors.

Forked River Power donated $ 3,000, and became the tournament sponsor for the Ocean Acres Country Club's Sept. 23 golf event in Manahawkin.

And for that the family is very grateful. They don't always have a sponsor for the tournament.

"Brandon will be 17 in September and he continues to have all the same struggles," said his mother, Marie Blair. "He requires 24-hour care. This money will go directly for caregivers, medicine, diapers and other needs."

There are constant needs, and some of them are unforeseen, she said. Just a few weeks ago, there was a $ 400 bill for new eyeglasses. Then, they broke.

"He does remain happy and content, and excited at starting at a new school," she said. Brandon attends Children's Center of Monmouth County. "It's the fund that keeps him a happy and content child."

The Brandon Blair Trust fund has been raising money for 15 years.

"We never expected there to be a second fundraiser, because we didn't expect him to be here," Brandon's mother said.

Sponsorship opportunities are still available. They begin at $ 50, and go all the way up to $ 2,000. All money donated goes to Brandon. Contact the fund for the tax ID number.

The golf outing is Monday, Sept. 23 at the Ocean Acres Country Club, 925 Buccaneer Lane, in Manahawkin. Lunch is at 11 a.m. and tee time is 1 p.m. For more information, call Harry Cupolo at (732) 606-4032.

New golfers are also welcome. It costs $ 125 to play, and comes with lunch and dinner. Checks are made payable to the Brandon Blair Trust, P.O. Box 172, Brick, NJ 08723.

What Next?

Related Articles