When Kyna and Eric Nichols of Chandler had twins last March, they knew they would face challenges after learning their daughter had Down Syndrome. What they didn’t know was that their son would also be diagnosed with a rare medical condition seven months later.
“I think in a mother’s heart you know that maybe something isn’t quite right but we didn’t know exactly what was happening,” Kyna said.
After numerous tests, Kyna learned her son, Cooper, had a rare form of epilepsy called infantile spasms. Early on, Cooper would have subtle seizures. Now, he seizes nearly 100 times a day, Kyna said.
“The seizures happen in clusters so he has about 10-20 seizures at a time and when he has them they just physically knock him over,” Kyna said.
In March, shortly after learning of Cooper’s condition, Kyna found out that she was pregnant and is expecting another child in October.
Since Cooper’s diagnosis, the Nichols family has been to many pediatric neurologists and epileptologists trying to find a cure.
“We were told he would not speak or read or recognize us and a whole other list of disabilities as well,” Kyna said.
After meeting with a doctor at Cardon Children’s Medical Center in Mesa, the family was referred to a team of neurologists at UCLA.
Kyna said the neurologists were able to identify which portion of Cooper’s brain the seizures were coming from which led them to believe that Cooper would be a good candidate for a hemispherectomy — a surgical procedure that will remove half of his brain. The goal is that, in recovery, the left side of his brain will compensate for the right side’s functions.
“Hopefully, if the surgery is successful, which we believe it will be, he should live a happy, normal life,” Kyna said.
Cooper is scheduled to have a hemispherectomy at the UCLA Mattel Children’s Hospital in Los Angeles on September 6.
Kyna, who is 31 weeks pregnant, said she is hoping to be back in Arizona in time to deliver the baby. If all goes well with the surgery, the family should be in Los Angeles 3-4 weeks.
“We hope that the baby stays in until we are back home and Cooper is recovering,” she said.
After learning of the challenges facing the Nichols family, neighbors of the family decided to try to raise money and awareness.
“We said, ‘why don’t we put together like a fundraising page to start posting it on Facebook and asking people to share?’” Shannon Hakes said.
The fundraising page, listed on giveforward.com, was launched on August 15 and has already raised nearly $20,000.
“The community has been fantastic and sharing the story through social networking has been amazing,” Shannon said.
Hakes shared the Nichols’ story with Nicole Hammontree, owner of AZ Snoshack, who decided to organize a fundraiser for the family through her business.
“Anything to do with kids has my heart and I just wanted to help the family,” Nicole said.
The fundraiser was held on August 27 from 2-8 pm at AZ Snoshack’s location on the southeast corner of Greenfield Road and Germann Road in Gilbert. Hammontree said that they saw three times the amount of customers they see on a typical Tuesday and raised about $1,000 for the family.
Kyna said she was very appreciative of all of the monetary donations but that the prayers and kindness from the community has been the most powerful gift.
“It’s provided a lot of strength I think for our family that we didn’t know was possible,” Kyna said. “It’s given us a lot of support in ways we couldn’t have even imagined.”
How to help
To donate or learn more about Cooper Nichols, visit evtnow.com/5sb