Jack’s Story

Jack from Shannon, was born healthy and happy in January 2001. However, within a few weeks he was admitted to the Rainbow ward in the Children’s Ark in Limerick, suffering with breathing difficulties and severely underweight. Unable to diagnose, he was sent to Our Lady’s Hospital for Sick Children in Crumlin (under Lung Consultant Peter Greally) undergoing 4 weeks of tests, x-ray scans, blood reviews and as a last resort, a lung biopsy – which we were told showed Jack had a condition called Interstitial Pneumonitis. At the time we were told it was just a generic term for breathing difficulties. Back in 2001 internet in our household was limited to a very slow dial up and searching information on Interstitial Pneumonitis only seemed to bring up very disheartening prognosis. The computer was turned off after most results showed a very short living period of 4 years, which we just did not want to know about. Especially, as we always just took his diagnosis as a general term and not an actual diagnosis.

Jack went through the next few years of his life fed through a g-tube and hooked to an oxygen tank 24 hours a day; all the while we tried to lead some sort of normal life. Despite this and being in and out of hospital, Jack always has a great and positive outlook on life. After nearly 4 years, Jack was able to handle 3 hours a day without oxygen – allowing him to first attend Montessorri and then finally, his local primary school. From there, Jack was weaned off oxygen during the day and finally at almost 8 years of age, weaned off night time oxygen. In 2012 Jack caught another virus which has left him needing oxygen at night again; it was during this time that led his mum to check the internet again for information on lung diseases and during that search we found chILD Lung Foundation, and not only did this have links for support from an American chILD organisation, it was for UK/Ireland families. Jack is now almost 15 years old. He is still on overnight oxygen at the moment. His weight and height have gone through the roof in the last 2 years he is now 164cm and 45kg. He does have a pectus excavatum and you can see his breathing is a little laboured still but he has a fantastic quality of life. He has never let chILD hold him back and loves playing soccer with his friends.