Kathleena Clancy turned 3 in December. She was born with EB which means certain parts of her body can blister easily and her skin needs to be bandaged. Mum Tina spoke to Thomas Lyons from The Anglo Celt about Kathleena joining their family in 2018.
Kathleena has dominant dystrophic EB which affects her left leg and parts of her right. She wears knee pads on her right leg and parts of her left leg have to be bandaged to protect her skin. “Depending on how her skin is, we will bandage Kathleena each morning and evening and during the day if a wound makes it necessary. She likes to help with the bandaging process. It can be a bit time consuming but, as she grows, it will become part of her learning how to look after herself.”
It’s easy to see Kathleena enjoys being active, despite her EB. There was an extensive process before she joined the Clancy family. The family were contacted in September 2018 by the Helping Hands adoption agency. They were given photographs of certain parts of her skin and were told it looked like Kathleena had the milder form of EB. She joined the rest of the family – Tina, dad John and brother Ivan (9) when her adoption from China was complete in November 2018: “We went into it as aware as we could be. We knew she had a problem from her Chinese medical reports, but at the start we didn’t know what EB was. We were concerned we wouldn’t be able to look after her. We are learning about EB as we go; there is no predictability.”
“It’s a challenge. Kathleena blisters and wounds much more easily than a normal child but we don’t let EB compromise what she does. She loves jumping on the trampoline and playing football and, if she ends up with blisters and wounds, we deal with it and bandage them. Her skin was much worse in the heat of the summer. She’s too young to tell you ‘this is really hurting me’. It affects her more at night. After spending time doing up her bandages, putting on her pyjamas and putting her to bed – she could be minutes in the bed – then you find she got at her leg, scratched it and tore the skin.”
The change in the family structure has been a bit of an upheavel: “Her brother is very good. He is 9. He has been on his own for the last number of years so to get a new sibling is a big thing. Add to that she’s not a newborn baby, but a fully fledged two year old in the middle of his toys. But they get on well and he’s very good to her.”
The family is receiving support from Crumlin Children’s Hospital: ” We bring Kathleena to the EB Unit in Crumlin three or four times a year. DEBRA Ireland have also been very supportive, they are a fantastic organisation. ” Tina hopes the research funded by DEBRA Ireland may improve the future for her child: “A comforting light in the background is that we are being told about clinical trials on treatments that are being worked on at the moment. They could take several years before they are available, but it could be dramatically different for Kathleena.”
Thomas Lyons, The Anglo Celt.