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Noah Jackson
This little light of mine
On a cold January evening in a quiet labor and delivery room, a young couple held their expected arrival and named him Noah. Casey and Rebecca Jackson knew he’d require treatment for club feet. They were anxious but prepared. The Jacksons had already walked a difficult road with their firstborn, Ryan. The day they welcomed Noah’s big brother into this world, they also kissed him goodbye. Ryan’s inherited condition had been misdiagnosed, and his parents had no idea they both carried a recessive gene for Fraser’s syndrome. Noah was born with the same rare congenital disorder as his big brother. “We knew there were problems right away,” says Rebecca.
Fraser's syndrome occurs in only
4.3 of 1 million live births
The relationship between the Jacksons and Children's Hospital Central California began with a three-week stay in the neonatal intensive care unit. Since then Noah has received continual care from a lineup of pediatric subspecialists for various complications related to Fraser’s syndrome. Dr. David Hodge, pediatric surgeon, performed Noah’s colostomy the day after he was born. Dr. Michael Dunham, medical director of pediatric otolaryngology, gave Noah his life-saving tracheostomy a few days later. Dr. Peter Witt, medical director of pediatric plastic surgery, repaired Noah’s webbed fingers. Dr. Devonna Kaji, medical director of pediatric urology corrected deformities of the ureter. Dr. Reddivalam Sudhakar, medical director of pediatric pulmonology, monitors Noah’s respiratory function, and Dr. Joseph Gerardi, medical director of pediatric orthopaedic surgery, straightened his club feet. “We were so concerned about the club feet,” says Rebecca. “And they ended up being no big deal.”
“Rebecca has this little light inside of her,” says Dr. Gerardi. “How easy it would be to say ‘woe is me’ but she’s not like that. I think I told her to cross me off her list. Not that I don’t want to see her anymore, but it’s one less appointment she’ll have to make.” In just two years of life, Noah experienced 10 surgeries and six bronchoscopes. “He did so well with us we’re pretty much out of the picture,” says Dr. Gerardi.
Finding amazing people at Children's
occurs 1 million times over
Rebecca loves Children’s Hospital for making the uncommon common: “Just being there made me feel much more comfortable.” She spoke of sitting in a waiting room alongside other children with a tracheostomy “just like Noah.” Away from the Hospital people stare. But when she and Noah come to Children’s for a visit they fit right in. “They were so ‘That’s-who-he-is-so-that’s-OK,’” says Rebecca. “I feel normal here being around parents going through the same thing.”
Casey and Rebecca have received tremendous support from Brad Bell and Jerrod Rumley, pastors at The Well Community Church. “The way these two have strengthened their faith and their marriage through this has been something to see,” says Bell.
When asked to describe Noah’s personality, the Jacksons’ pastors responded with a low chuckle. “Let me tell you why we chuckled,” says Bell. “There’s something about this little guy who has so much adversity, handling surgery after surgery, and showing such durability. There’s a joy about him and a light.”
“Noah makes you feel special when you’re around him,” says Rumley. “There’s just something about his personality that draws you in. There’s a spark in there, and I think it comes from Mama.”
With the bulk of Noah’s surgeries behind him, the family hopes to make fewer trips to the Hospital. “He still has a lot of mountains to climb over,” says Dr. Gerardi. “You can’t just fix it. You have to manage it.” The devotion of Noah’s family and the expertise of his medical team at Children's have helped Noah manage his Fraser’s syndrome remarkably well. In many ways, he acts like any other 2 year old.
“Right now we’re working on learning to jump,” says Rebecca. “He’s very proud of himself.” Here at Children’s Hospital we’re proud of Noah, too.