Please Help Pippa fight EB #pleasehelppippa

Our beautiful baby girl, Pippa Nancy Atkinson arrived on 24th July 2016. One year on, we are overwhelmed by the strength and tenacity of one little girl fighting a truly horrible skin condition that you’ve most likely never heard of.

When she was born, Pippa was missing 90% of the skin on her hands and feet. My husband Damian and I were told that she had an incurable disease, Epidermolysis Bullosa (EB).

We are asking for your help to raise funds for life changing medical equipment. Pippa is amazing; she fights EB every day and will continue to do so for the rest of her life. Please help Pip with her daily battle.

About Pippa’s condition

We, like so many others, we had never heard of this condition before. Epidermolysis Bullosa is listed in the top 10 most painful conditions on earth. It’s a random genetic fault that affects every aspect of every day. EB is a group of genetic skin conditions that cause the skin to blister and tear at the slightest touch.

Those born with EB have skin so fragile they are called 'butterfly children' – their skin is quite simply as fragile as the wing of a butterfly.

Beginning life as a Butterfly Child

Pip spent the first 23 days of her life in the Special Care Baby Unit (SCBU). We thought that the beginning of Pippa’s life would be spent at home in South Wales with her brother, her close relatives, and us. Instead, she was kept under close observation at Great Ormond Street hospital, whilst we learnt to lance her blisters, dress her wounds and handle her without causing further damage to skin.

When she came home we were unable to hold or cuddle her. We could only handle her with oils on our hands to prevent friction and she spent most of her time on a pillow.

One year on

Every day we face new obstacles. For months she could only wear her clothes inside out, as the seams caused her to blister. Now, her clothes have to be flat seamed specialist made or adapted so that the fabric doesn’t break her delicate skin.

Pippa undergoes daily full dressing changes which last up to two hours where her blisters are lanced, dead skin and scabs softened to gently remove without damaging the new skin underneath. Any kind of friction can cause new blisters to form, blisters must be lanced to prevent them splitting. Open wounds must be dressed with specialist non-stick dressings.

Throughout the day any large blisters that form need to be lanced. Pippa gets 50/60 blisters a day all over her body and inside her mouth. She has to have nappies lined to stop them rubbing and numerous different creams applied in an attempt to reduce friction. As she grows, and develops the urges to crawl and walk, her hands, knees and feet constantly have to be bandage

To cope with the pain Pippa takes daily morphine, 6 hourly Paracetamol and on bad days sedatives.

Hope

There is no known cure for EB. However, American doctors have identified hydrotherapy as an effective treatment.

Microsilk is a specialist bath available in the US. It injects micro air bubbles into the water, which gently exfoliate the skin to remove dead skin and scabs, breaking the EB blister scab cycle.

This is the only form of treatment available for EB, and will be vitally important to Pippa as she grows and learns to manage her condition independently. Unfortunately, neither the NHS, nor the council are able fund the cost of Microsilk.

We are looking to build a one-bedroom extension with specialist bathing and changing facilities for Pippa. This will enable her to have a private area to complete her daily dressing changes set up specifically to her needs, reducing stress and allowing her a relaxing space to soothe her skin.

The building costs for a one bedroom extension with bathroom will cost £17000, the bath £5000 and we've budgeted £3000 for decorating and maintenance.

Thank you

We appreciate you taking the time to read Pippa’s story. Your support is hugely appreciated.