When Catriona was born, she was very thin at just five pounds and her skin was yellow. I knew something was not right.
After several weeks of testing, we discovered Catriona had a genetic disease called Alpha 1 Antitrypsin Deficiency that affects the liver and lungs. Catriona had cirrhosis of the liver — as a newborn!
My daughter’s diagnosis completely turned our lives upside-down. My husband and I had always planned on returning to Ireland, our home country, with our family. However, Catriona's medical care became our first priority, and we knew it was in our best interest to stay in Boston and treat the disease.
Catriona’s hospital stays and doctors’ appointments take up considerable time, so I haven't been able to work since her diagnosis. This means my husband has to work six — sometimes even seven — days a week to keep us afloat. He misses out on a lot of time that could be spent with his kids, but the bills have to be paid!
My other children, Alan and Joanna, have also had to adjust to a life where "mom" spends more time at the hospital than at home. It’s been hard on them. On the upside, they are quite independent and mature for their ages.
Of course, Catriona’s diagnosis has affected her most of all.
Because of her illness and so much time away from school and friends, Catriona has missed out on a lot of her childhood. For several years, she lived with a g-tube and in 1999 underwent a life-saving liver transplant.
September 9, 2008 will always be a significant date in her life — that’s the day Catriona underwent a kidney transplant. She received her father’s kidney.
It has been an emotional rollercoaster, never knowing what else is around the corner for Catriona, waiting to disrupt our lives. It's tough to watch our 14-year-old deal with so much medical upheaval in her life and know that there is still a very long road ahead.
A few years ago, we saw a poster about Starlight in the child life playroom at Tufts Floating Hospital and signed up for its programs. The Floating Hospital is next to a theatre, and many times Catriona would look out her hospital window at the happy people attending a show and feel sad she was not a part of it.
However, thanks to Starlight, Catriona has been able to attend many ballets and shows at that very same theatre. She has also enjoyed trips to the circus and even a tween rock concert. Catriona always looks forward to these events, because they make her feel like a regular concertgoer!
Starlight’s Great Escapes family events bring so much delight to Catriona. They show her that fun is possible in her life — just like a regular kid. I have met many nice people at Great Escapes who have opened our eyes to the fact that we are not alone and that there are many people out there dealing with medical issues just like us.
Catriona is our miracle. She has endured so much without complaint and has made us realize the importance of living life to the fullest, one day at a time.
-Starlight Mom Joan