Katie holds her son Jamie who lives with generalised severe epidermolysis bullosa simplex (EBS).

Contact Names: Katie and Matt White

Inspired by: Jamie White

What we are raising money for: Research into EB Simplex

 

Jamie's story

“Jamie has generalised severe EBS. He was born with no skin on his feet, knees and hands. Where there was intact skin, it blistered. He is the first person in the family to have EB so it came as an enormous shock.

The first six months were so terrible. They consisted of dressing changes daily, constant blister, wound care and medication. He was held only on a pillow and had round the clock morphine. Since these horrendous days, we as a family have come a very long way. Life is in no way what we planned but caring for Jamie and his EB has become the new normal.

Jamie is just delightful – the happiest, sweetest, contented little baby – who is the bravest person I know – we are so proud of him!

The daily routine is quite structured to allow for Jamie’s extra care needs and to ensure he feels safe and comfortable at all times. 

Before this, Jamie has a full skin check, lancing all blisters which have occurred overnight. I dress all the wounds and put protective dressings on before dressing him and giving his pain killers. He then requires dressing/nappy changes through the day which are incorporated into our activities. I lance any blisters I see through the day.

Jamie has to be handled very carefully and have soft or cushioned surfaces at all times. He has a large dose of morphine before the evening meal so he’s ready for his bath and dressing changes. This lasts on average one hour depending on the wounds present. Blisters are lanced/cut, dead skin removed and wounds dressed. This is a very distressing time for Jamie every night.

Typically Jamie has thirty to forty blisters a day. Some areas are in a constant state of blistering. The most difficult thing about EB is seeing your child in pain. Knowing that the care you are giving is causing so much pain and distress. Secondly the worries for his future and participating in activities of daily life.

The path we had planned has changed. I can no longer return to my job as a nurse as I need to stay home to care for Jamie. To help with this I no longer have a car, and the family budget is reduced. As a mum, EB affects my life completely! When Jamie was born, I suffered with depression, now managed with medication and counselling to help with the trauma and heartache I feel every single day.

After Jamie was born I was immediately seen by my EB nurse, Victoria, who then visited very frequently at home. She was, and is, amazing! DEBRA provided a changing table to keep all the dressings in and signposted me to disability living allowance to help soften the blow of not being able to return to work. The information booklets and website are a good reference to anyone wanting to know more.

The initial devastation, anger, denial, why us? Mental trauma and depression has eased greatly and EB has become our new normal. But although I’m my old self again and can function (most of the time) I still have a deep heartache permanently there that never leaves me.

I feel extremely proud and in awe of Jamie, his happiness and joy keeps me motivated to stay strong.

I want to raise awareness to make the condition known, firstly to my local area so those close to me have an understanding of what we are all going through. My aim is to normalise the condition in our local area so no one questions the blisters and wounds Jamie has and the dressings he wears. Raising awareness has led others to donate to DEBRA and hold fundraising events.

Fundraising helps my recovery as it feels like I’m doing something to help. EB has no cure and that can leave me feeling helpless – fundraising has helped with this. The fundraising and awareness I hope will ultimately help find treatments and a cure.

The research sounds very interesting and positive for the future. I really hope Jamie can benefit from it. I want to raise awareness to prompt donations to DEBRA and ultimately fund research. I want people to have a broader knowledge of this skin condition so we don’t feel quite so isolated. When I discuss EB with someone who tells me they already know of the condition it’s a nice feeling to be understood.

I had negative energy that I wanted to turn into a positive outcome. Focusing on fundraising and raising awareness really helped. The kindness and generosity of my local community is heart-warming.

Katie, Jamie's Mum