“When Liam was born our lives were turned upside down. We had never heard of EB before and understanding its complexities and knock on effects was something we had to deal with every day. Life as we knew it was not normal anymore. We loved Liam with every ounce of our hearts and he brought us so much joy – that never changed but having a child with EB had its struggles, particularly at the start.
When we look back it was almost like a grief. As he got older his personality really came out – he had a wicked sense of humour! His ability to manage daily, despite the constant pain he was in, was something we will never understand.
As he got older, feeding became the enemy. The battle to get food and medicine in got so tough because it was so painful for him to swallow which often lead to him becoming poorly. Meal time regularly involved having a sick bowl in one hand and a dinner bowl in the other. As a result Liam would often lash out in anger as a way of coping. In 2014 Liam had a peg fitted which allowed us to get the required nutrients and medication into him via a tube into his belly. He was attached to this for 8 to 10 hours over night. So what we came to expect was that every few years we had to modify how we did things to allow Liam as much independence as possible.
The lowest point for us was the medical implications and the fact that Liam was not able to have a normal childhood. He was never able to play sport and was unable to keep up with other kids. He had numerous hospital admissions and operations and they were very tough on him and us. Seeing him in pain was the hardest part of it all and feeling completely helpless.
Having a child with EB has a different impact on the family. There can be a little bit of jealousy from other kids in the house. This is not intentional but can often emerge as EB takes up a lot of time and spending quality time with others becomes less of a priority. Because me and Mom were his primary carers we had very little quality time away from EB – everything always went back to EB. Sleep deprivation was another major part of EB because Liam would be itchy or in pain and often not able to sleep. Someone always had to stay awake with him which meant our house ran on shifts a lot of the time.
We couldn’t have coped without DEBRA Ireland. Emotionally we wouldn’t have been able to do it. We relied on Deirdre so much and for a long time Deirdre was the only one we could talk to. DEBRA understand without having to explain. They encouraged us that we were doing a good job and kept us going particularly when things got tough. DEBRA Ireland also provided some financial assistance. They helped us apply for council grants to build a purpose built extension for Liam and guided us through a major fundraising appeal to raise the rest of the funds which meant Liam had his own bedroom and wheelchair accessible bathroom, which made a massive positive impact on our family life.
Life was hard enough without the additional medical, emotional and financial implications EB brought to our family. There are consequences to having EB. Our house needed adaptions, our car was no longer suitable- we often hurt him without wanting to and damaged his skin simply by lifting him in and out of the car. The constant trips to hospitals and appointments. To provide Liam with a “normal life” sadly costs money and in addition support and understanding – DEBRA Ireland have given us all this in the past.
If DEBRA Ireland services were removed people would have nowhere to go. They helped us so much.”
Sadly Liam lost his battle with EB and passed away on the 1st October 2016 with his family around him.
To support patients like Liam, please text BUTTERFLY to 50300 to donate €4 or donate HERE.