Jayla Amel Morrison was born on June 11, 2009.  I had no idea these first five years would be as challenging as they have been. Jayla came into the world at just 4lbs 3oz.  Beautiful but frail, she was immediately placed in the NICU, primarily because of a need for oxygen.  While in the NICU, the doctors and nurses discovered several new areas of concern; Jayla was not eating well, and failed more than a couple newborn hearing screenings.  Jayla remained in the NICU for seven long weeks.  I just remember test after test with the doctors trying to figure out what was going on with our sweet girl.

It was a local neurologist who saw Jayla during those NICU days that ordered an important test that would eventually help in figuring out this puzzle.  Because her eating on her own never improved, her first of several surgeries was the placement of a feeding tube.  Upon release from the NICU, Jayla was referred to Children’s Hospital in Denver, CO.  At this point, she still had not received a diagnosis. At three months old, the results from the tests our neurologist ordered were instrumental in a diagnosis of Peroxisomal Biogenesis Disorder (PBD).  We really didn’t receive much information during that first meeting at Children’s Hospital; the only thing I really remember was the doctor saying the majority of the babies diagnosed with this disorder only live a year or two and that there was no real treatment. Of course, we were devastated.

After many hours of research, we discovered the work being done in Barcelona by Dr. Manuela Martinez.  We immediately made contact with her and in December of 2009, we took our first trip to Barcelona.  After just a short time of working with Dr. Martinez, and Jayla taking the DHA-EE, we saw an obvious improvement in our beautiful girl.  Prior to the visit Jayla showed all of the typical signs of someone with this horrible disorder, low muscle tone, irritability, and a general failure to thrive.  That first trip was about four weeks and when we returned, you would have thought we brought back a different baby.  Jayla was so alert, making cute babbling noises, and was even trying to sit up on her own! Ever since then, Jayla has been making amazing progress, at her own pace of course.

Today, Jayla attends kindergarten with other visually impaired children, at the Colorado School for the Deaf and Blind.  She works so hard and is so full of life.  Jayla smiles all the time and has the most infectious laugh. She does not walk but loves to crawl around the house and explore. Like her mother, she is very musically inclined and loves to play with her toy piano and drums.  In the last year, Jayla’s hearing has declined. This summer we made the decision for her to get cochlear implants, since her hearing aids were no longer doing the trick.  This is still new, but we are hopeful she is on her way to better communication.  She is a beautiful, bright girl and we know she has plenty to tell us, when the time comes!

Jayla’s Liver Panel