“It’s been a long road to get to a diagnosis,” said Kerri Scott, Brady’s mother.
Brady was born with Food Protein Enterocolitis Syndrome (FPIES) and Mast Cell Activation Syndrome (MCAS) and prior to being home during the pandemic, through food testing, he was able to tolerate about 15 foods without getting sick.
“Because we were home more, we could do more food trials and for Brady this was a benefit,” Scott said. “He has gained about four or five new foods.”
Besides Brady, who is the youngest Scott child, the family includes sister Rilee and brothers Noah and Kaden. Over the years, it’s been challenging for the entire family to do things together.
“One of the things we really struggle with is by the time you do doctor’s appointments and everything else that happens with a medically fragile child, there isn’t much time left,” Scott said.
Scott and her husband, Rian, both work full time and her job as a nurse put her on the front lines of the pandemic. And medical expenses have kept them on a tight budget since Brady was born. Scott said she stumbled upon a link to the organization “A Kid Again” and looked it up.
“We have been involved with A Kid Again for about a year,” Scott said. “This organization has allowed us to do things together we would never have been able to on our own.”
A Kid Again is a national organization that exists to foster hope, happiness and healing for children with life-threatening conditions in their families. The southwest Ohio chapter, headquartered in Cincinnati, is working to make life for families caring for sick children as “normal” as it can by helping them create family-shared experiences and memories.
“We did the King’s Island event first,” Scott said. “We had an entire day at the park riding rides and we had plenty of food — all at no cost. This is something we normally wouldn’t be able to do.”
When the global pandemic hit, like most other organizations, A Kid Again had to switch gears and convert some of the 12 adventures they host annually to remote, at-home events.
“We have been providing services to families here in southwest Ohio for 20 years,” said Nick Wagner, executive director of A Kid Again locally. “We now have about 900 families we serve with 250 of those living in the Dayton area.”
Wagner said that once children are on their list, they remain eligible for services until the age of 20. Besides helping families like the Scotts experience positive adventures together, the organization also connects them with other families that may have children going through similar medical issues.
“We are different from other ‘wish’ organizations because we fill the gap left after the once in a lifetime wishes are granted,” Wagner said. “Families can take part in our activities year-round.”
Among these adventures are days at theme parks like King’s Island, Dayton Dragons games, holiday parties at places like the Newport Aquarium and visits to the Cincinnati Zoo, all at no charge to the families.
“During the pandemic we had to throw away the rule book,” Wagner said. “We had home activities and offered drive-through pick up of our ‘adventures in a box.’”
The Scott family joined right before the pandemic hit, but they were still able to connect with other families on social media, though face-to-face meetings were not possible. Brady has enjoyed everything they have experienced so far and now that the pandemic is winding down, he is back to what his mom calls “a pretty normal life.”
“He’s not at any higher risk for COVID,” Scott said. “I know some of the other families have been very cautious, but we are hopeful to go back to normal so we can finally meet in person.”
Brady’s older siblings are 21, 18 and 14 years old, but all say they have enjoyed the A Kid Again events. Wagner said one core component is how the organization serves the needs of the entire family.
“We want everyone to be a kid again, too,” Wagner said. “And we are going full force until the end of this year to make up for all the things we missed like birthdays and holidays.”
To learn more, visit akidagain.org.
Contact this contributing writer at banspach@ymail.com.
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