Family, Friends Run to Raise Funds for Seriously Ill Toddler

A 5K run scheduled for Saturday and a website that has been set up to raise funds will help the Menifee family of a 2-year-old stricken with a rare disease.

Grayden Legg was born with an extremely rare genetic condition in which a tiny piece of his second chromosome is missing. Because of this condition, normal developments are a struggle. When Grayden was 10 months old, the Legg family was given more devastating news; Grayden was diagnosed with West Syndrome, a tragic form of epilepsy.

Doctors told the Legg family that Grayden would need constant care for the rest of his life, never walking, talking or eating by mouth.

Grayden was put on three powerful medications in the hope of stopping the seizures, but was still seizing over 60 times a day. He was placed on a feeding tube, because he could no longer suck or swallow.

“He had damage to his brain to where he forgot how to do everything that he knew how to do and he went back to a newborn again,” said Carissa Legg, Grayden’s mother. “He would just lay there all day, sleep all day because he has seizures all day. He stopped breathing, he had to have resuscitation and he was hospitalized a lot because he’d get really, really sick whenever he was sick.”

After seeing Grayden suffer for so long, the Legg family realized that the medications were not as effective as they wanted and decided to turn to alternative medication. Legg said that she learned about the benefits of alternative medication through a friend.

“We just tired of seeing Grayden suffer every day, so we started talking to other parents and went toward alternative medicine,” said Legg.

Grayden receives intensive therapy, stem cell therapy and hyperbaric oxygen treatments, which together greatly improve his quality of life. Now at 2 years old, Grayden is reaching the milestones that he lost from the constant seizing. He is developmentally at 3-4 months, eating most of his meals by mouth, and sometimes going one day without having a seizure.

The Legg family has stayed positive throughout this ongoing journey with Grayden, relying on their faith when times get tough.

“Through our faith, just knowing that God has a plan for Grayden and no matter what His plan is, we know that,” said Legg.

However, the treatments that are helping Grayden are not covered by insurance. The Legg family is relying on donations from the community in order to give Grayden the help that he needs. In order to raise the necessary funds, the family is participating in the Southern California 6th Annual Hearts for Hope 5K Saturday, and has encouraged the community to participate as well.

“We’re trying to raise money so his quality of life is better and he can run around like every other little kid can,” said Carissa Legg.

If you are interested in signing up for the 5K or donating to Grayden, please visit the site https://mitchellthorp.org/team/the-light-in-gray/93/ All money donated by following this link goes straight to Grayden to help cover his medical needs.