Toddler battles rare diseasePublished 8:49pm Wednesday, March 10, 2010
Jackson Jinright only says one word, “Mama.”
His dad, Travis, encourages him to say, “Da-da” but Jackson only smiles and says, “Mama.”
“He calls everybody he loves, ‘Mama,’” said his grandmother, Barbara Jinright of Troy. “And we love to hear it.”
Jackson just celebrated his third birthday on March 3, 2010.
It has been a difficult three years for the little fellow and those who love him. When he was only four months old, Jackson was diagnosed with Peroxisomal Disorder, a rare congenital affliction caused by the absence of cell components.
“Jackson was a beautiful, bright and happy baby but Travis and Angie were concerned that he wasn’t gaining weight and wasn’t very active,” Jinright said. “He underwent testing at Children’s Healthcare of Atlanta, but it wasn’t until he was four months old that he was diagnosed. Peroxisomal Disorder is so rare that it’s hard to diagnose. Only about one in 150,000 have the disorder so many doctors are not familiar with it. There is no cure.”
Jinright said developmental delay and impairment of vision and hearing is common to the disease.
Travis and Angie Jinright immediately began doing their own research in hopes of finding somebody somewhere who might know something that would give them hope.
That glimmer of hope came from a distant place.
“On the Internet, Travis found a doctor in Spain who has been working for more than 25 years in the field of brain development,” Jinright said. “Dr. Manuela Martinez is a pediatrician and biochemist.”
Either by chance or by fate, Angie Jinright’s parents were traveling in Europe and visited Martinez in her clinic in Barcelona.
“They were very impressed with her and, in about two weeks, Travis, Angie and Jackson were on a plane to Spain,” Jinright said. “They were there for six weeks and, in that length of time, Jackson made great improvements. His treatments included a fatty-acid DHA dietary supplement that, along with intense therapy, aid development. He gained weight and was able to sit up and was much more active. It was very encouraging. It gave us hope for a better life for Jackson.”
The Jinrights make the trip to Barcelona twice a year and are there for a couple of weeks while Jackson undergoes treatments.
“Jackson has recently been fitted with a cochlear implant in one ear and it has improved his hearing, but they were unable to fit him with a cochlear implant in the other ear,” Jinright said. “But we are so thankful that the implant has improved his hearing in the one ear.”
Jackson wears glasses but his sight has continued to deteriorate.
“He will not eat so his nourishment comes through a stomach tube,” Jinright said. “He has trouble with textures. If Fruit Loops are placed on the tray of a high chair, most children will play with them, but Jackson can’t stand for one of them to touch him. Some things he just can’t handle.”
At this time, Jinright said Jackson seems weaker and less lively than a few months ago, but he remains the same happy little boy.
“He started school this week and will go four days a week,” Jinright said. “It will be good for him to be with other children, and he will have special help there. He will continue with his schedule of therapies on Wednesdays. We are very hopeful of future treatments for Jackson and others who have this disease and are so appreciative of the prayers for Jackson.”
Travis, Angie and Jackson live at Sugar Hills near Atlanta. Jackson is the great-grandson of the late Dorothy Jinright of Troy. His grandparents are Therald and Barbara Jinright of Troy. A fund has been established to help the family with the expenses associated with Jackson’s treatments and the travel to Dr. Manuela Martinez’ Clinic in Barcelona. Donations may be mailed to The Jackson Jinright Foundation, First Citizens Bank, 2055 N. Brown Road, Lawrenceville, GA 30043.