Cumulus Media Making Miracles Radiothon
When: 6 a.m. to 6 p.m. Friday; the Reese family will appear on Q100’s The Bert Show from 6:30-7:15 a.m. Friday.
How to listen: 6-10 a.m. on Q100; 10 a.m. to noon on Kicks 101.5; noon to 2 p.m. on NewsRadio 106.7; 2-6 p.m. on Rock 100.5
To donate: choa.org/radiothon or 1-866-781-8811
The Reese family has had more than its share of medical struggles.
But the Flowery Branch family has found a way to help others by sharing its story. The family of six will participate in the Cumulus Media “Making Miracles Radiothon” on Friday to tell others how Children’s Healthcare of Atlanta has helped treat three of its four children.
“I love being able to tell our story and let people realize how important the hospital is to us and how much they’ve helped us,” said mother Kim Reese.
Kim and her kids Tyler, Noel and Jax will appear on Q100’s The Bert Show in a live broadcast from the atrium of Children’s Healthcare of Atlanta at Scottish Rite Hospital in Atlanta.
The 6 a.m. to 6 p.m. radiothon will raise money for CHOA and Children’s Miracle Network. It will be broadcast across the Cumulus stations Q100, Kicks 101.5 Rock 100.5 andNewsRadio 106.7 FM during different parts of the day.
The Reese family began its relationship with CHOA in 2012 when Noel was diagnosed with epilepsy. Noel, now 12, had her first seizure in July 2012 and underwent months of testing and treatment. She is now on medication to control her seizures.
In 2015, Kim and her husband, Brian, were hit with another shock when their youngest son Jax was diagnosed with cortical dysplasia. The condition is caused by a clumping of neurons in the brain, which also causes seizures.
The two diagnoses are not related, nor are they genetic. Jax’s condition is different from Noel’s because he was born with it and will have it the rest of his life. Doctors said Jax, now 7, has likely been having seizures in his sleep his whole life.
By contrast, Noel’s condition developed spontaneously with no known cause. Doctors said if she goes two years without having a seizure, she can begin to wean off her medication. This month she will reach 15 months seizure-free, so the family remains hopeful she will make a full recovery.
The children’s seizures last between 5 and 30 seconds. Noel said she can predict when a seizure is coming through what is known as an “aura.”
“I get butterflies in my stomach and then I know what’s going on,” Noel said. “Sometimes I start mumbling and then I just pass out and I always wake up on the floor.”
Kim said the first time she ever saw Jax have a seizure was one of the most gut-wrenching experiences of her life.
“He crawled up in my arms and said ‘bye bye Mommy, I’ll see you tomorrow,’ and he was gone,” she said. “Time almost stands still. It’s the longest 10 seconds of your life. I just called his name and said ‘please come back to me, please come back to me.’”
This fall, the family was dealt a third blow. Their oldest son, Tyler, who is 17, was diagnosed with Type I diabetes, the chronic form of diabetes that usually affects children and is lifelong.
“We won the genetic lottery,” Kim said, laughing.
The family has a second daughter, Amber, 10, who does not have any medical conditions.
Tyler’s diagnosis was a lucky accident, he said. When he went to the hospital in October after a lacrosse injury, a blood test came back showing his blood glucose levels at nearly 400, almost three times the normal level.
Kim said she was blindsided by Tyler’s diagnosis, because Type I diabetes does not run in the family. Looking back, she said signs began this past spring, when Tyler was on a mission trip in Nicaragua and lost 16 pounds and began suffering from excessive thirst.
“You never put the puzzle pieces together at the time,” Kim said.
Tyler underwent a crash course in Type I Diabetes management at CHOA along with treatments every two to three weeks. He now tests his blood regularly and is on two types of insulin along with adjustments to his diet.
Through it all, the children said they have had a wonderful experience with the staff at CHOA. Doctors and nurses gave the younger children toys and brought games into the room while they were undergoing testing.
“They’re so loving and so kind and so good with children,” Kim said. “I’m grateful for how they were able to take care of us and treat us with such kindness. There was so much laughter.”
Kim said she is especially thankful for the way the hospital has treated Tyler. She said she appreciates how doctors and nurses treat him like an adult when explaining his condition and treatments but also keep her involved in his care.
“They treat him with the respect of an adult but still treat me like his mom,” she said. “They bridge that gap beautifully.”
One CHOA program in particular that the Reese children have benefitted from is “Camp Carpe Diem,” a weeklong program for children suffering from epilepsy that takes place every summer at Camp Twin Lakes in Winder. Noel has been for four years, and Jax has been once.
The two look forward to returning this summer to participate in activities such as rock climbing, horseback riding, canoeing and a talent show. Noel said she loves the opportunity to meet other children with her same condition and feel completely normal.
Jax said he loves swimming and bonding with the camp counselors, who are trained to care for children with epilepsy. He loved it so much he didn’t want to come home.
“It’s such a confidence builder,” Kim said. “It’s a true break for them. They get to do whatever they want.”
Through the community at CHOA, Kim said the family has made connections with others facing epilepsy and Type I Diabetes. Her relationships with other parents of children with epilepsy led Kim to get involved with a cause she is passionate about, the use of medical marijuana to treat epilepsy.
Her children do not qualify for medical cards because Georgia law restricts medical marijuana use to only the most severe cases. But Kim hopes other children can benefit from treatment with a non-psychoactive form of cannabis called cannabidiol, which research suggests can be effective in the treatment of epilepsy.
She said it can be a milder alternative to many of the anti-seizure medications, which can cause harsh side effects including anxiety attacks and slow mental processing, or even death.
“We’ve had friends who have had to sign letters saying, ‘I know this medicine may kill my child, I know this medicine may blind my child,’” Kim said. “That is why we helped fight for cannabidiol in the state of Georgia because I don’t want anyone to have to sign that kind of letter.”
Kim and Noel met with state Sen. Butch Miller, R-Gainesville, and state Rep. Timothy Barr, R-Lawrenceville, to lobby for access to cannabidiol and hope to see results in future legislative sessions.
Kim said this is a cause she never would have discovered without her involvement at CHOA. She hopes Friday’s radiothon will help raise awareness for her children’s conditions and for the work CHOA has done to help her family.
“Hopefully this will help somebody else realize what’s going on with their own children to recognize the signs,” she said.