Michiana family asking community for help to treat son with rare genetic disorder
ST. JOSEPH COUNTY, Ind. –Keaton Crull was born with spinal muscular atrophy, also known as SMA. A rare genetic disorder that affects his ability to move and live normally.
Doctors at Riley Hospital for Children in Indianapolis told his parents they can’t treat him. Now, his family is looking for other ways to help their son beat the odds.
"As long as he’s going to fight, we’re going to fight for him, and I don’t see how you could not,” Said Jennifer Crull.
Keaton Crull was born with type zero SMA, a rare disease believed to affect as many as 10,000 to 25,000 children and adults in the United States. The genetic disorder affects motor neurons in the spinal cord and can cause progressive muscle weakness, and problems with breathing walking and swallowing. And for little Keaton, his parents say the prognosis wasn’t good.
"The recommendation was to take him off the breathing machine and spend as much time as we can with him while he passes away and that he would die within hours to days, “said Kyle Crull.
But taking him off support isn’t an option for the Crulls. They said they quit their jobs to be able to better care for Keaton, who’s still down at Riley in Indy right now. After spending hours researching the condition to find a treatment that could potentially save their son's life, they found Spinraza.
The Crulls said the treatment isn’t available at that hospital. Jennifer Crull managed to get one dose of the drug donated by a pharmaceutical company, but she and her husband claim Riley can’t administer the other doses needed. Other hospitals are technically an option.
“We found other hospitals that are willing to take him, but our insurance won’t cover for him to be flown to those hospitals, and because of his current condition, we can’t just drive him,” said Jennifer Crull.
Now, the family is trying to raise money and is asking for help from the community. They have set up a GoFundMe page to help with expenses for travel and treatment. They also want to bring awareness to SMA and let families know that there’s still hope.
‘We want to get him his treatment and get him stable to where he can come home, where you know the journey will by no means be over at that point, but it will be a lot easier because then at least the family can be together,” said Jennifer Crull.
The GoFundMe page for the Cull family can be found here.