Through Operation Dream Maker, our partnership with Make-A-Wish Mid-Atlantic, we’re helping make wishes come true for the children of military families in the Washington D.C. area.
As energetic wish kid Brooks jumped around the room, elated by the sight of his birthday balloons, it’s hard to imagine the struggles that he faced to reach the joyous milestone of his fifth birthday.
After surgery to repair his cleft lip at 12 weeks old, his family hoped that would be the only setback Brooks faced. As he continued to grow, his parents noticed things weren’t quite right as he his speech wasn’t developing at the same rate as other kids his age. They returned to the genetics team at Johns Hopkins Hospital.
The medical providers diagnosed Brooks with a rare genetic disorder with a life expectancy of 20 years old. While Brooks was born with this disorder, he remained undiagnosed much of his young life as the disease was so rare even his medical team did not know of the disease at the time. Brooks remains one of the only children in the state of Maryland with the diagnosis.
“I was shocked and devastated,” his mom, Sharon, said. “I felt really lost because we didn’t have any answers.” Brooks’ initial diagnosis began the long journey of hospital visits and doctors’ appointments. Fortunately, there was hope on the horizon.
Brooks joined a medical trial at the University of North Carolina Chapel Hill for a new medication that could potentially prolong his life, causing the family to leave home and move there for 10 months. Although the medications will not provide a cure, they would replace the enzyme that his body is missing while treating the organ and brain damage that previously occurred as a result of the disorder. On June 21, 2021, Brooks received his port and began weekly infusions for the trial, exactly three years to the day of his cleft lip surgery.
“The first six months were the worst,” Sharon recounted. His infusions cause him to have various reactions such as hives, high fevers and intense bouts of nauseousness. “He is the bravest and happiest boy, certainly a lot braver than me sometimes,” she said.
When Make-A-Wish Mid-Atlantic shared the news with Sharon that Brooks qualified for a wish, she didn’t know how to receive the news. “At first, I was upset because I thought that meant things were really bad. Once I realized this was an opportunity to bring him all the happiness he deserves, I started to get really excited,” she said. Brooks is non-verbal, which meant she and her husband, Pete, had to take an active role in helping Brooks to determine his wish. As they batted around ideas, Pete reminded Sharon of a family outing to a park with water features that Brooks loved when they lived in North Carolina. Sharon and Pete knew Brooks’ wish had to include the tranquility and peace that being in nature and particularly, on the water, brought to him. As Sharon was perusing the Facebook group of moms of children with the same condition, she discovered a fellow wish kid received a fishing boat. “We realized that was something we could never otherwise give Brooks on our own. He’d been on a boat twice before and absolutely loved it,” Sharon said.
Brooks’ wish was determined – to have a fishing boat!
Brooks’ boat was delivered from Semora, North Carolina in partnership with NC Marine Sales, who made sure it was in his driveway in Fallston, MD, just in time for his big birthday bash with friends and family. As soon as Brooks laid eyes on the fishing boat, he ran straight to the stairs and wanted to climb aboard. He couldn’t stop smiling from ear-to-ear, donning a hat that read ‘Captain Brooks.’
While Brooks has undergone treatment since he was three and a half years old, he hasn’t shown any signs of the typical deterioration that often occurs in children with his condition. Although the future is unknown, Brooks and his family remain optimistic and are eager to create joyful memories on his boat. They look forward to taking him out to enjoy one of his favorite activities, fishing. “We can’t wait to go out on the water with it,” Sharon said. “When he first got on the boat, Brooks kept pointing forward, as if to say, ‘c’mon, let’s go!’”
About Make-A-Wish
Founded in 1980, Make-A-Wish has granted hundreds of thousands of life-changing wishes to children battling critical illnesses. For these children, a wish come true can be a crucial turning point in their lives. A wish can be that spark that helps these children believe that anything is possible and gives them the strength to fight harder against their illnesses.
In February 2021, Amentum partnered with the Make-A-Wish foundation to launch Operation Dream Maker, a program through Make-A-Wish Mid-Atlantic to fund wishes for children of military families. Military families in the Washington, D.C. area can use this initiative to request a wish.
