Local child seeking organ transplant finds support from national group
For the past six years, Frida and Todd Brooks have raised their son, Elliot Brooks, as he struggles with a costly and dangerous genetic condition. Now, with a kidney transplant in the family’s future, they are raising money with help from the Children’s Organ Transplant Association for what they expect will be a lifetime of medical-related expenses.
In October 2014, the Brooks family celebrated the birth of their newest member, Elliot Brooks.
The celebration, however, was short-lived. Elliot failed to grow, except for a swelling in his kidneys noted during routine checkups.
Later that year, Elliot was diagnosed with Congenital Nephrotic Syndrome, a disease that caused one of his kidneys to fail at a very young age. In 2015, it was removed. Ever since, he’s had to use a gastrostomy tube to help him eat.
“It’s been almost like having another full-time job just taking care of Elliot and his medical needs,” Elliot’s father Todd Brooks said. “Multiple trips to the hospital, to the clinic for blood draw, special medicines. He only eats certain foods. He gets nauseous easily.”
As a result of his condition, Elliot has to receive nighty shots in his stomach and is much smaller than most children his age. Despite everything, Elliot, now 6, has stayed optimistic, always smiling.
His parents help him deal with treatment using code words like “Freddie,” a term they picked up while living in Ireland, to refer to Elliot’s blood drawing procedures.
The family knew since birth he’d eventually need a transplant to reduce his risk of medical complications. Earlier this year, the Brooks family started looking for donors. Neither his dad or mom, Frida Brooks, can donate their own kidneys because they have a different blood type than Elliot’s.
The process of finding a viable donor can take a long time and be incredibly expensive. It can take weeks for potential kidney donors to be found viable for transplant, plus there’s the transplant-related costs including medication and doctor’s appointments over the course of Elliot’s life. which could cost the Brooks’ family up to $2 million.
“Once he is transplanted, it is a life-long medical need just to keep his kidney from failing,” Frida Brooks said.
The Brooks family has partnered with the Children’s Organ Transplant Association, a national nonprofit that helps families struggling with transplant-related medical expenses to raise funds to help pay for Elliot’s treatment.
“It’s a great organization,” Frida Brooks said. “Instead of having the GoFundMe, this is a situation where the hospital and the social workers set it up, so it is instantly more credible.”
The association, located in Bloomington, Indiana, has been helping families the past 35 years. Every year, they assist about 250 new families across the country. At any given time, the organization is connected to around 3,500 families.
Costs for childhood transplants can range anywhere from $800,000 to over $1 million depending on the organ and where the family lives, according to the association.
The Children’s Organ Transplant Association hopes to raise $100,000 for Elliot using an online campaign website. All of the funds will go directly to pay for expenses the family incurs as a result of the future transplant.
“When families are facing the transplant journey, there are just so many things that they’re dealing with,” said Kristy Brown, Children’s Organ Transplant Association’s chief development officer. “The medical aspect, the emotional aspect, caring for their family. One of the things that we are able to do that has really inspired me is to help with that financial component.”
During the pandemic, the Brooks family has had to remain especially safe because Elliot’s condition puts him at a higher risk for medical complications.
Elliot’s grandmother Eva Sellman moved in to help the family — first in Ireland, and now in Chicago.
Sellman is the community coordinator for Elliot’s donation campaign; she’s worked with Children’s Organ Transplant Association volunteers to help organize the fundraising campaign.
“I’m just hoping it is going to be OK and that we find somebody,” Sellman said.
The family said they are hopeful about a potential candidate for Elliot’s transplant who is under consideration. And they’re on their way to meeting the $100,000 goal: They have raised over $30,000.