Abbygail and Colton Ainslie were among the first ten kids treated with a new therapy developed to treat “bubble boy disease “ and among the firs three kids cured.
Abbygail was born in July of 2011 and seemed perfectly fine but her mother worried. Abbygail’s older brother Colton had been diagnosed with severe combined immune deficiency syndrome (SCID) commonly referred to as “bubble boy disease” named for the 13-year-old boy, David Vetter, who lived his entire life in a plastic isolation ward before succumbing to the illness in the 1970s.
Abbygail passed all the tests given at the hospital when she was born. She even weighed in at a healthy 9 lbs. but her mom, Jessica Ainslie had concerns so she had Abbygail genetically tested. Sure enough, the results proved Abbygail had the same form of SCID her brother had.
Knowing that another baby had a one in three chance of having SCID, the genetically inherited disease, Jessica and her husband talked and prayed over their decision. Colton, who is now 5, had been treated by Dr. Kohn with an experimental gene therapy and was better. Jessica knew she could rely on the doctor to treat another child if necessary.
Dr. Donald Kohn, a professor at UCLA’s Department of Microbiology, Immunology and Molecular Genetics, developed the technique to treat the group of diseases lumped under the SCID umbrella that affect one in every 100,000 newborns.
The particular type the Ainslie children have, SCID-ADA, creates a faulty enzyme that causes immune cells to die, leaving the victim unable to fight off germs. Colton, who was born premature at 26 weeks, had it but then seemed to recover for a time before worsening. One the proper diagnosis was reached, Colton was given specialized care before being placed in the clinical trials which have now effectively saved his and his sister’s lives.
The treatment is expensive and the kids will likely need boosters for the rest of their lives but Jessica says it is worth it. Abbygail is now one year old and Colton just started kindergarten, a feat Jessica thought he’d never live to do.