Already experienced parents of three, Bridgett and Tim Toma knew exactly what to expect when they went in for Bridgett’s routine 20-week ultrasound with baby Alexandra.
How to help
Alexandras Ambition Foundation will hold a fundraiser, a Family Fall Fest and 5K walk/run, Sunday, Oct. 2, at Konows Corn Maze, 16849 S. Cedar Road, Homer Glen.
for runners/walkers, for non-race participants, includes a T-shirt, all-day admission to Konows Pumpkin Farm and the fest.
?Find more info at alexandrasambition.org
Except it suddenly became anything but routine. In the next 48 hours, they learned Alexandra has a rare disease called Arthrogryposis Multiplex Congenita, which causes decreased flexibility of the joints and affects 1 in every 3,000 live births. Bridgett, a nurse, threw herself into finding out everything she could about what Alexandra and their family faced.
“I was up all night every night, but there was very little out there because her condition’s so rare,” Bridgett says. “But I found enough to know what to expect.”
The adorable 3-year-old, who loves to sign and wiggle to music, has undergone eight surgeries and a ton of therapy to make her body more functional.
The Tomas fly to Philadelphia every two to three months to see an AMC specialist, the first doctor who gave Bridgett any hope that Alexandra could walk one day.
After Alexandra was born, family and friends held a benefit to help with the costs of her care. Then, inspired by Alexandra and her ambition for life, the Tomas and those family and friends started a foundation, Alexandra’s Ambition Foundation, to help other families impacted by AMC. Since insurance doesn’t cover everything families need, the foundation helps.
“These kids are amazing. They have so much potential, but they need the right resources and tools to get there,” Bridgett says. “… Not a day goes by that I don’t see some kind of progress (with Alexandra) that makes me smile.”
Bridgett jokes that she and Tim have become pros in juggling the four kids’ schedules, work and home and now the foundation. They work as a team to make sure Abygail, Audrey, Aiden and Alexandra are their first priority.
“She’s really changed my life,” Bridgett says about Alexandra. “Honestly she’s inspired me to really live a better life. Seeing her, she just enjoys life. She never complains. She puts every amount of effort into getting things done her way because she can’t do them like we can, but it doesn’t stop her.
“She has really taught me how much there is to life and how much there really is to enjoy no matter what’s going on.”