• curetbm

Meet Kyle!




Kyle was born on June 28, 2004, weighing 6 pounds and 6 ounces. He was tiny and perfect. He never cried and slept through the night at 4 weeks old. 6 months later he caught his first cold. He started coughing and never stopped...

Kyle spent his first Christmas in the ER, with bronchiolitis and his first New Years in the picu, with pneumonia. He hit all his developmental milestones, but he was tiny (16 pounds on his first birthday) and he was always sick.

When he was three, his pediatrician said he had asthma and just got sick easily. He had already had pneumonia 5 times. We got used to the coughing and the stares. We even got used to strangers pulling their children away from him. It really is amazing what you can get used to...

Kyle started kindergarten weighing 32 pounds. He missed his first Halloween parade and his first school Christmas party that year.

His pediatrician sent us to an allergy and immunologist specialist. The doctor had him try spirometry and then threw it in a drawer. She said "well, that can't be right." In hindsight, I'm sure it was dead right. They did allergy testing, an immunology work up and a sweat test. Everything came back "normal" except for a "minor dust allergy." She actually told me if I cleaned my house better, he wouldn't be Ill all the time. I later found out that she had wrote in his chart "small for age, poor diet." Two days after his "normal" checkup, I drove him to her office and sat in her waiting room for FOUR HOURS because she wouldn't see him. When we finally got called back, he had a fever of 105 and bronchial pneumonia. I almost got arrested that day and I admit I lost my temper. That pneumonia didn't clear for over a month. The doctor would then admit I wasn't crazy, but she couldn't help him. And he just kept coughing...

By his 8th birthday, Kyle had pneumonia 11 times. He had been diagnosed with "chronic croup." He was on a daily dosage of prednisone and his Flovent and albuterol dosages were at more than 3x the recommended, for his weight. And he just kept coughing...

We were on a waiting list to be seen at Hershey Medical Center, when Kyle got his 12th pneumonia. The one that almost killed him. Our pediatrician recommended I drive him to Hershey's emergency room, because an ambulance wouldn't take him. We met Dr. Graff that day and our lives changed forever.

Finally a doctor that listened to me. Within one week, Kyle had his first bronchoscopy. I will never forget Dr. Graff holding my hand and explaining malacia to me. It wasn't croup; it was never croup! All those pneumonias? They found pseudonomas and staph in Kyle's lungs. Nosebleeds? An out of control MRSA infection, in Kyle's sinus cavities.

Then,  he requested Kyle's records since birth (seriously, what doctor does this?). That sweat test, that was "normal" three years earlier? It was 58 (2 points below positive, well into the suspicious range) and he was on massive doses of prednisone for "croup" at the time. He re-did the test and resulted in a positive score of 92. He even dug far enough to realize the birthing center, where Kyle was born, began newborn screening 2 weeks after Kyle was born.

On October 8, 2017 we will be celebrating our 5 year anniversary of meeting Dr Graff. Kyle will have Cystic Fibrosis (CF) and the acquired form of tracheobroncomalacia for the rest of his life. When he saw a new pediatrician and I mentioned he has malacia, her response was "you mean HAD malacia as a baby." Because doctors don't know. They don't look for it. It took 8 years for a diagnosis. 8 long years, for a doctor to put all the pieces together.

Kyle is now 13. In the last 5 years, his Pulmonary Function Test (PFT) scores have gone up 25%. His O2 levels have gone from 89% to 96%. His height has gone from 5th percentile to 40th. He went from missing 20+ days of school to 2 (last year). He isn't asleep at every event. His eyes aren't black anymore. And.... HE STOPPED COUGHING.



If you're passionate about funding research for TBM, please consider a donation below. 

Every donation is appreciated as CureTBM is the ONLY foundation that funds TBM research in the world!

2020-top-rated-awards-badge-hi-res.png

Connect with Us!

 

Looking for support? Have questions? Join us on Facebook, Twitter, and Instagram!

Phone: 1-973-534-7158

Email: info@curetbm.org

Facebook Support Group:  "Cure TBM. Tracheobronchomalacia Support Group"

  • Facebook
  • Twitter
  • Instagram

CureTBM is a 501(c)(3) non-profit organization.  

All rights reserved. 

Mailing Address:

CureTBM C/O Jennifer Champy

128 Pennsylvania Court

Chapin, SC 29036