LH CHAMBER LH BUSINESS Business Awards

Luncheon

Tuesday, February 14

11:30 am Check-In/Networking 12:00 pm Lunch/Awards

Knights of Columbus 10110 Shoreview Dr.

Tickets $30 per person

Tables and Sponsorships Available Awards

Small Business of the Year

New Business of the Year

Business of the Year

Non-Profit Agency Legacy Award

(Individual that has contributed to the success of Lake Highlands)

For more information and to purchase tickets go to www.lhchamber.com the 85th Texas legislative session this month, the money becomes available.

ALD is present in one in 17,000 births. “In Texas, there are diseases they test for that are much more rare than ALD,” Jenna says.

In our state, about 24 children a year are born with the defective gene that leads to ALD. About 10 of those will develop the disease in childhood, like Julian. Most of the remaining males will develop an adult version called AMN, enough, the bone marrow transplant can work. Kids who proceed that way have led normal lives.” which also is incurable and debilitating.

The action and camaraderie has helped, though Julian’s family frequently feels that life is a waking nightmare.

“Last year we all prayed so hard at the Thanksgiving table that God would heal him, and we had no idea if we would spend the next one with or without him,” Jenna recalls.

Since their brother’s death, Casey, 11, and Quin, 4, have attended bereavement camps and counseling, thanks in part to those donations last year to the “Snuggle Julian” foundation.

Kurt, who works at a fitness center in Lake Highlands, explains that grief is like a weighted vest. You wear it around and start to get used to it.

Three states, New York, New Jersey and California, already have established procedures and launched newborn screening.

“Texas just needs funding to implement testing. The protocol is there, but the longer it takes, the greater the chance that other boys will die,” Jenna says. “In cases where they catch it early

“But some days you suddenly feel its full weight crushing you, and all you can do is suffer under its heaviness,” Kurt says.

The support of family and neighbor has made it easier to bear.

“Though I don’t always want to be known as the mom who lost her boy,” Jenna adds, “the [notoriety] is the price you pay for all the love you got — that’s something we’d never trade.”