Two Kids, One Benefit: Friends Come Together to Help With Frankfort Family's Medical Bills

Parenting can be one of life’s most rewarding roles, but it also can be one of the most challenging. Most parents would agree their child’s health is of the utmost importance, but think what life might be like for a family that has to deal with a child's life-threatening illness.

For Allison and Bill Brya, that fear became a reality. Twice.

Their children, Bella, 5, and Liam, 2, suffer from rare disorders. With help from family, friends and 115 Bourbon Street, the siblings are being honored with a child-friendly benefit that Allison calls "a day of celebration." The Sept. 11 benefit will raise money for the family's medical bills with a silent auction, live entertainment and several raffles. 

"Between both kids, (the Bryas) deal with so much, so they do what they can," said Julie Rinozzi, a family friend and the coordinator of the benefit. "Some days are better than others."

Two Rare Conditions 

On Sept. 7, 2008, Allison and Bill Brya’s oldest daughter, Bella (who was 2 1/2 at the time), suffered an arteriovenous malformation rupture—when blood leaks into the brain after a tear in an abnormal connection of arteries and veins—on a seemingly routine trip to the zoo, causing severe damage to her nervous system. 

The rupture caused Bella to slip into a coma for several weeks. Once she regained consciousness, her ability to walk and to talk were affected. After several reconstructive surgeries and procedures, Bella is responsive, but she needs her parents’ full attention and assistance in every moment of her day. 

On Nov. 20, 2009, Allison gave birth to a son, Liam, who was born with a rare condition called microtia, which is the underdevelopment of the ear and jaw. Liam was later diagnosed with another rare malady, Goldenhar syndrome, a condition that causes the incomplete development of the ear, soft palate, nose, lip and jaw. 

Several routine tests also revealed a large tumor at the base of Liam's brain stem that cased him severe pain and discomfort. Because his case was so serious, Liam's doctors decided to remove only a portion of the tumor because the procedure could cause irreparable damage to his motor and cognitive skills, a chance the Brya family was unwilling to take. 

A Bike to Bring a Smile

Allison says that having the kids back home and no longer spending days and nights at the hospital is a blessing. But the children’s health problems present a continuing struggle for the family.

"It’s tough," she said. "It’s one day at a time. If we get a day of smiles, we’re good."

One thing that could generate some smiles for Bella would be a specially built bicycle. Before Bella’s diagnosis, bike-riding was a favorite activity for her, but her condition has taken that away.

"She cannot ride her bike anymore because she doesn’t have control of her trunk," Allison said. "So we have been trying to buy her a special-needs bicycle for two years now.

"(It) would help her therapy. Just the movement of the pedals and her arms (alone) could help her with her control.”

Unfortunately, the special-needs bike is not covered under the Bryas’ insurance. But next week's benefit could help the family acquire it.

"We’ve done mailings to probably 500 businesses (in Frankfort and surrounding area), seeing if they’ll be able to donate something," Rinozzi said. "Both kids need medical supplies and therapy. It’s expensive." 

Benefit for Bella and Liam

When: 2-7 p.m. Sunday, Sept. 11
Where: 115 Bourbon Street, 3359 W. 115th St., Merrionette Park
How much? $30; $10 for children 6-12; free for kids younger than 6. 
More info: Call 708-388-8881 or go to the Brya family's website or 115 Bourbon Street's website.