The story of Ian
This is Ian!
Ian is a very happy & active 9 year old boy who just so happens to have a genetic, progressive & incurable lung disease.
Within 24 hours of birth, Ian went into respiratory distress, his lungs on the verge of collapsing. He was treated for pneumonia in his one week stay in the NICU. From birth to age four, Ian suffered 20-30 infections every year. These infections included pneumonia, requiring IV antibiotics and countless other chest and ear infections. Ian was thought to have & tested 3 times for Cystic Fibrosis with results being “inconclusive”. He was treated for severe asthma and spent two years taking medications that never helped. Finally, at the age of 4, a doctor with a background in PCD did a nasal biopsy followed by a genetics test, both came back positive for PCD.
For years Ian struggled to grow and was considered “failure to thrive”. He suffers from being immunocompromised, intermittent hearing loss, sleep apnea, parasomnias, GI issues, vitamin & mineral deficiency and vaccine resistance. Even with positive PCD diagnosis and starting treatments almost 5 years ago Ian continues to get quite sick, even while on antibiotics. His PCD has progressed much quicker than expected.
He has approximately 200 infections to date. These infections range from influenza, parainfluenza, ear, sinus & chest infections, pneumonia and strep to more serious infections such as staph, Nontuberculous mycobacteria & other funguses growing in his lungs.
He has undergone multiple surgeries/procedures includin GI scopes, multiple bronchoscopies to clean out his lungs, PICC lines to administer antibiotics, as well as removal of his tonsils, adenoids and multiple sets of ear tubes. He is set to have his 10th surgery on February 24th, 2022. This surgery is to expand his sinuses in the hopes that will aid in better drainage and potentially allow him to breath a bit better.
To say its been a rollercoaster of a ride this past 9.5 years is an understatement but Ian does not let it get him down!
Up until Covid Ian played year round baseball for 4 years, ice hockey, ball hockey & even dabbled in LaCrosse for a season.
After missing out on sports for a whole year to covid, he had finally be given the go ahead to join one more sport at the end of this past Summer. Ian picked Hockey and was so excited to get back to it… he made it on the ice just 3 times in October before taking a bad fall down the stairs at home and breaking his shoulder in 2 places. He has not yet been able to get back on the ice.
Other than playing organized sports, Ian also enjoys spending time with his 2 brothers, his friends , playing road hockey, skateboarding & of course, video games.
He is extremally smart & wise beyond his years. He is caring, loving and most of all tough and brave. He is a Friend & a Hero to all who know him 🧡