Listening to Braedon Ondos excitedly talk about his love ofastronomy and Legos, or hearing him play the piano, one might neverguess a rare disease is ravaging his 10-year-old body.
"I love outer space, the stars, black holes and anything havingto do with astronomy," said Braedon, a home-schooled third-graderfrom Peters who is one of an estimated 20,000 people in the UnitedStates with a genetic disorder called primary ciliary dyskinesia.
"I probably won't be able to be an astronaut or go into space,though, unless they cure this."
The disease means the cilia -- hair-like structures in the lungs,sinuses and ears -- do not have the ability to clean mucus andbacteria from the body, leaving those with PCD with extremerespiratory problems that can lead to permanent lung damage andheart defects.
In Braedon's case, his organs are on the opposite side of hisbody. He is extremely susceptible to infections and germs andsuffers from dozens of bouts of pneumonia yearly. His days arefilled with medicines, therapies and doctor visits.
Monday is National Rare Disease Day. Michele Manion, executivedirector of the PCD Foundation, will join others from the group inWashington to raise awareness of the disorder, and to lobbylegislators to continue support of the Office of Rare DiseaseResearch as lawmakers look to trim budgets.
Braedon's mom, Lori Ondos, plans a trip to the U.S. Capitol inthe coming weeks and is producing a documentary and book about thedisease. She is organizing an October masquerade ball at the LeMontRestaurant on Mt. Washington to raise money for research and forcreating a national registry for PCD.
The respiratory symptoms that accompany PCD mimic other diseasessuch as cystic fibrosis. Because the disorder is rare, patientsoften are misdiagnosed, Manion said. A national registry would allowdoctors to enter information about patients and be connected toresearch and data on other cases.
Diagnosing Braedon took more than five years.
"That, without question, was the longest five years of my life,"Ondos said.
When Braedon was born on June 29, 2001, he was breathing rapidlyand appeared to be struggling. Ondos, a mother of two older boys,knew it wasn't normal.
A chest X-ray showed his heart was on the wrong side and hislungs were filled with fluid. He was in the neonatal intensive careunit and battled 14 bouts of pneumonia before he was 7 months old.
Countless specialists were confounded by what could be causinghis illness. When Braedon was 5, the Make-A-Wish Foundation grantedthe family a trip to Walt Disney World. The day they left, anothercase of pneumonia surfaced for Braedon. Surgery removed hisadenoids, and tubes were put in his ears to improve the drainage offluid from his body and ease his breathing.
"It wasn't looking good," Ondos said. "It was really touch-and-go."
She began doing research on the Internet. She made sure biopsiesof Braedon's lungs were sent to the University of North Carolina atChapel Hill, where a team of researchers was dedicated to PCD, whichOndos knew nothing about.
Even after the diagnosis, Braedon struggles. Visits to achiropractor two or three times a week "greatly improved" thecondition of his lungs and seem to have helped his immune systemrebound. He's gained 25 pounds.
Dr. Michael Hanlon of Lifestyle Health Group in Peters saidchiropractic treatment can improve or eliminate digestive problems,asthma and even infertility because everything in the human bodyconnects to the spine.
"Your central nervous system runs everything, and on every levelof the spine there are nerves which control and communicate withdifferent organs," said Hanlon, who began treating Braedon two yearsago. "So when the body shifts out of alignment it can put pressureon those nerves and interfere with messages between the brain andorgans and cause problems."
Braedon is participating in a study through UNC with 338 otherpeople, and Ondos hopes the knowledge scientists are gaining therewill provide faster diagnoses and further the efforts to find acure.
Still, he cannot be a "normal kid," she said. He can't go tobirthday parties, attend regular school or have friends over forplay dates. His older brothers, Cody, 16, and Logan, 13, help fillthe void, but more than anything, their mother wants a long, healthylife for Braedon.
"I am determined to find a cure for my little guy and I know thisis my purpose," she said. "This is why God gave me Braedon."
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