Mary Rose Ward spoke to us about life for her daughter Charley who was born with EB.
“On the 25th September 2011 our beautiful daughter Charley was born. That was the day everything changed. We had never heard of EB so getting the diagnosis, we expected the worse. We weren’t educated about EB so we worried about her future and even though things have gotten a little better and I am far stronger than ever before, I am still always wondering “what next?” What was hard to understand initially was that Charley’s diagnosis was not genetic (passed on from me and my partner) but a spontaneous mutation so in layman’s terms it can happen to anyone.
When she was born I used to cry every night. I worry about her feet as she still finds it hard to wear shoes and although she walks, she walks in a way that is less painful for her but because of this the bones in her feet are changing shape. I absolutely dread taking her sock off because rest assured there will be new blisters every day.
Life has become more stressful as I worry about her all the time. Life becomes all about EB and the restrictions on what we can do as a family. It affects absolutely everyone in the family on every level. I would describe myself as a positive person but it gets into your head. Now I feel sad all the time although I try not to cry. I would love her to experience the same life as my other children but that is impossible. A simple thing like taking her socks off causes so much anxiety for her as her feet are the worst affected area.
It is heart breaking when Charley says “I am bad mammy” which indicates she is in terrible pain. She tends to cope very well most of the time but sometimes it can be too much for her. I smile when I think of her, she is my absolute hero and I love her so much. At night if she has had a bad day and she is in a lot of pain, because I have had to burst all her blisters, she won’t speak to me and will only let her Daddy comfort her. It’s like I am the baddy because I have had to burst blisters and he is the goody.
We have two other kids and they get less attention, at times leading to our son crying and thinking he is not loved. Even our relationship has changed and at times becomes very strained. We don’t sleep in the same bed as one of us (usually me) has to sleep with Charley and she is such a restless sleeper due to pain. We worry all the time – planning a day trip or a holiday is not straight forward. All our kids love to go swimming but, because of her feet, Charley is really cautious and tends to veer away from this activity. Her bed needs to be stripped every day to avoid infection and finding clothes and shoes that are suitable can be difficult. I never complain anymore and we are lucky we have family support particularly Charley’s granny Theresa. She helps a lot and we are so grateful.
We have no specialised EB support where we live. If we didn’t have DEBRA Ireland we would have nothing. We had no knowledge of EB before Charley was born and my brother-in-law who lives in Dublin put us in contact with them. Their Family Support Worker, Deirdre, came to our house and explained all about EB and supported us in getting a referral to the EB clinic in OLCHC, Dublin. They have linked us in with other families and this has been invaluable. We love attending the peer meetings as it gives us a chance to meet other families and Charley has met other kids with EB, so she can see she is not the only one which really helps. It really helps taking to Deirdre because she knows what we are going through. She is always at the end of the phone particularly at the start when things were really difficult.
This condition is so painful and at times Charley looks like she has been scalded. EB is heart breaking and living with it is a living nightmare. DEBRA Ireland provides the help we need to keep going. They provide support, advice and a platform to meet other families which for us reduces the feeling of isolation. If DEBRA Ireland services were removed we would have no support and neither would our kids. We would be completely lost and have no confidence.”
To support patients like Charley, please text BUTTERFLY to 50300 to donate €4 or donate HERE.