Kim’s story: the love of a grandma knows no limits

My name is Kim, and I am Darcee’s grandma.

I help care and look after her as her mum and dad have to work. I have been happily doing this since she turned 6 months.

As a family member and a carer of someone with EB, life has been a roller coaster. Since day one, it has been really heart-breaking to see my daughter, as a parent, struggle with a newborn that was bor with a condition no one knew nothing about. I couldn’t offer any advice myself, as I knew nothing either!

But I am so proud of Darcee’s mam, Samantha, for this but.. when in hospital at 3 weeks old they had Darcee’s hands completely bandaged because of her blisters. The staff showed us how to change Darcee’s bandages and care for her wounds. She was discharged 6 weeks later.

When we got home, Darcee had to be bathed every other day and that would take nearly 2 hours with the 4 of us there (mum, dad, grandma and grandad). It was tough all round!

After a few months of this, her mum said: “I might keep her hands free tonight and not use the bandages”. Well, I was petrified. I thought “Oh no, she’ll get an infection or hurt herself more”,  but knew her mum had the right instinct and did not want to be in the way. This turned out to be the best thing that ever happened. So we tried then unwrapping her feet, and it was the same! I’m so proud of my daughter taking the risk as all worked out well.

After a while, things got a lot easier for Darcee, and we went through a stage of almost forgetting she needed extra care. But each new stage brough its challenges. When she started walking I changed my flooring and furniture in case she fell. When  she started nursery and then school, it got really hard as she couldn’t wear the uniform everyday (as it rubbed & caused blisters).  This was when Darcee first asked us: “Why am I like this?”. We explained as best we could. And Darcee being her own great person just  shrugged and said “ok!”

The other kids were too young to comment so everything was fine for a while. But primary was again different all together: a bigger school, other children, and other mums! People commented on the beginning by asking if she’d fallen & hurt herself or if she’d chickenpox or similar when they would see her wounds. It was hard trying to explain things to them but the school was very good and her class mates soon adjusted.

Darcee is a butterfly in more ways than one.. she’s a social butterfly, she loves company and making friends. And when the kids ask “what’s those marks on you?” Darcee just brushes it off saying that’s just my special skin.

She leads a pretty normal life (well, our normal). Her routine involves wound care every morning, vests still worn inside out to school. If she’s had too many “fun” days at the park we have to have a rest day at home in comfy pjs for her skin to recover.

Darcee understands all this but every now and again she’ll say: “Nanny I wish I didn’t have special skin,” it’s heart-breaking.

We’re very lucky in that we have a great family around us, with lots of cousins, aunts and uncles, and each one have helped in Darcee’s journey by supporting, caring and just being there if needed.

Darcee was even a flower girl at my niece’s wedding and got to wear a beautiful princess dress (especially chosen so it wouldn’t rub her skin). I love my niece for giving her that day as a princess!

Thank you so much Debra. We’d definitely be lost without you.