All of the events were aimed at spreading awareness and raising funds for a cure.
EDINA, Minn. — On a day without sun, a 4-year-old boy brightens up his parents’ world.
Sonny is a bundle of joy. His parents describe him as inquisitive, strong, brave, vocal and active.
Brittney and Kevin McKittrick invited friends, family and neighbors into their backyard on Saturday, as people ducked in and out of the rain.
“We are among over 1,000 walkers around the world raising awareness and funds for a rare disease and group of rare disorders called Brain Creatine Deficiency Syndrome,” said Brittney McKittrick.
Their son is affected by the disease, specifically Creatine Transporter Deficiency Syndrome.
“He’s one of 350 known cases,” Britney says, “so unfortunately we don’t have access to significant funding from the big pharmaceutical companies.”
Because his disease is so rare, there are few treatment options.
“A lot of these kids have seizures and other illnesses, heart disease,” Kevin said, “so it’s a complex issue and it takes a whole village.”
On Wednesday morning, the village took to the streets for the second year in a row.
“We were really excited when the Edina Fire Department came and led our walk,” Kevin said. “They showed up right before the walk and let the kids jump on the fire truck.”
Kevin and Brittany also hosted a raffle, all with the goal of spreading awareness and raising funds for a cure.
To donate to the Creatine Deficiency Association and help raise funds for Team Soon, click here. here.
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