'Every day is painful': mum shares reality of raising two children with a rare genetic condition

This week on our Mums Who Inspire series, we sit down with Ger Hyland, who's two daughters live with Epidermolysis Bullosa (EB), a rare and painful genetic condition. If you have a story that you would like to be featured, email mumswhoinspire[at]magicmum[dot]com.

Before her new baby was diagnosed with Epidermolysis Bullosa (EB), Ger Hyland had never heard of the rare yet life-changing condition. 

A genetic condition, an estimated 1 in 18,000 babes are affected by EB. This incredibly painful disease causes the skin and internal linings to tear and blister at the slightest touch. 

When Ger and Mark, from Swords, Co. Dublin,  brought now 14-year-old Alison home from hospital as a newborn, her skin was completely clear. 

"After a week or so I noticed a cut on her foot," Ger recalls. "I thought it was weird because we didn't have any pets and she was too young to move around much. I just thought she might have rubbed up against the Moses basket." 

After discovering more cuts appearing on the baby, they were referred to Temple Street. 

"We were oblivious, we just thought that she was just going to be given more antibiotics." 

Neither parent had heard of EB before. "I had to get the doctor to write it down for me" 

The diagnosis came as a complete shock to the couple. 

"It was devastating. You're looking down at a beautiful little baby in your arms and being told that they're going to have to have sedentary life." 

Nearly a decade and a half later, Alison and 9-year-old Erica, who also has EB, continue to inspire their mother. 

"They're so brave. They just get on with things. Kids will amaze you with how strong they can be.”

Erica, who had a 25% chance of having EB like her sister, was born without an skin on her right foot. 

Despite the five year age gap, the sisters share a special bond. 

“As much as we love and support them,as parents, we can never say ‘I know what you’re going through’, because we don’t.

“Both of them help each other out. They're compassionate and the understand each other's pain.

"We can forget that wounds can be frightening to those that aren't used to them. They don’t have that, they’re completely comfortable with each other.

“Of course, underneath it all they’re still just normal sisters. They love each other and they torment each other." 

Daily life in the Hyland family comes with many struggles, but they are determined to make it work. 

The girls constantly have wounds and blisters. They need specialised dressing and bandages to cover them and wear padding to prevent knocks and tips off furniture.  Even specific clothes that cause friction are out of the question. 

As well as skin wounds, EB also causes internal cuts and blistering. Sharp foods can cause cuts in throat or mouth blisters. 

"Their faces are clear so people don't usually realise what pain they're in. Every day is painful, but they're always smiling.

"In a weird way, they're used to it. They wake up every morning knowing that they're going to haver to pop some blisters." 

For Alison heading into the teenage years means that's she's more self-conscious of being different. 

“In her head, she’s a normal teenager. She still wants to go out get her nails done and do normal teenager stuff but she can't." 

At nine, Erica is also self-aware of her condition. "She's at the stage where she just wants to run, skip, jump, hop- but EB stops all that." 

Ger is determined that the girls will live life to to the best of their abilities. 

“We could have wrapped them in bubble wrap and never let them out of the house, but that’s no life.”

Thanks to Special Needs Assistants, the girls are able to attend local schools. "The girls wouldn't be able to go to school with their SNAs looking after them and dressing their wounds."

Ger herself recently returned to work as an SNA, "I'm so appreciative to them, and if I can give that back to another child or family than I will." 

As well as support from the schools, Ger is extremely grateful to the fundraising efforts and support offered by Debra Ireland. 

"It was so daunting when Alison was first diagnosed, but Debra have been a fantastic help. Even being able to talk to other parents who've been through the something is a great comfort. It's great for the girls as well to meet other children like them, to know that they're not alone. We go to events and there's no staring, they just get to be kids.

"Debra have been amazing, we feel like a part of a family." 

As well as providing support and specialist nurses for EB patients, Debra also funds research into a cure for EB. 

"There's always that hope at the back of your mind, that they'll find that cure." 

The support of family and friends have been indispensable for the family. 

"Take all the help you can get from charities, friends and family. Remember that you're not alone. It is hard but there's always help out there if you look for it." 

Until a cure is found, the girls continue to be loved by their family and friends, both inside and out. 

“If I could take it for them I would, I wouldn't wish this on anyone. I want everything for them and for them to be able to have as normal a life as possible." 

To learn more about Debra Ireland or to donate, see here.