Baby Sandra Butterfly Skin

Sandra is like a granddaughter to me she is nearly 1 and she is suffering from a rare genetic skin disorder called Epidermolysis Bullosa. Commonly referred to as EB or Butterfly Skin, because the skin is extremley fragile like a butterflys wing. It causes blisters and tears from friction on the skin or trauma.  As of today, there is no known cure or treatment. Daily wound care, pain management, and protective bandaging are the only options available. It can also seriously affect the internal organs and bodily systems and cause painful blisters in the mouth and throat that can make eating difficlut at times. The list of secondary complications, such as infections etc. is long and may require multiple interventions from a range of different medical specialists. Sandra has been for genetic testing & biopsy’s which her parents are still waiting for the results....This story begins long before Sandra was born; an insight as to why we have set up this page.  

Katie’s father Karl my best friend passed away 6 years ago from Cancer... Katie was 17 and pregnant with her partner Fernan. They brought Carla their eldest daughter in to the world and my god what an amazing job they did, Because they live in Spain they don’t have our NHS or help that we luckily receive (and may I say so many don’t appreciate) therefore from that day on, both of them worked there butts off working ridiculous hours to make ends meet. They worked opposite shifts so they had child care. But they didn’t complain; for Katie,  Carla was the one thing that kept her going after her beloved fathers death.   Fernans family and Katie’s  mother are not in positions to help out financially and the one person who could ... her father is no longer with us. Therefore this young family unit just got on with it the best they knew how with no security or guidance.. and may I say what a great job they did.  So they decided whilst Carla (named after her grandad) was still young they would try for another child.  2 miscarriages later Sandra was born April 2018 ( named after her Aunty who also unfortunately passed away so young).

Katie has to break Sandra’s blisters and wrap them with gauze. This needs to be done to prevent blisters from spreading and infection. which is something no parent would ever want to have to do. A blister can occur as easily as a tag rubbing her skin, an elastic on a nappy or even a simple touch. 

About 2 months ago I received a phone call from the strongest woman I know, Katie! she just broke down and realised she just couldn’t continue living this way anymore....baring in mind she works 6 days a week 8am-6pm then Fernan goes to work till 2am in the morning! The care of Sandra begins at 6am where Katie examines her child for new blisters and attends to her little body, wraps her up dresses her then heads to work as she passes the role to Fernan.  He will then see to Carla take her to school with Sandra, come home and look after his youngest. Who is,  even with all of the cutting, prodding and pain, still the happiest little girl I know.  Katie will then return from work, she says goodbye to her partner; feeds and bathes her 2 girls. Carla tries to help mummy as much as she can before both girls are put down to bed the re-bandageing, cutting, bursting blisters and cleaning them commences once more. They are both (Katie & Fernan) physically and mentally exhausted. On a few occasions when Sandra’s voice (which is raspy due to the blisters in her throat) has no sound when she cries she has to be rushed to hospital for the professionals to burst the blisters inside her throat and look after her till they can cause little harm.

Katie needs to cut her hours, As she gets older Sandra needs to be watched closely to prevent injuries and to provide daily wound care. With your help we hope to provide some monetary assistance to them for the bandages,  creams,  needles, scalpels etc and for medical expenses incurred due to travel for appointments and treatment. This treatment will be continuous for the rest of Sandra’s Life unless the Drs find a cure.   Katie has never asked for help before in her life, she just wants to provide the best care for her little girl!  In order to do that she needs to be with her, in order to do that she needs financial help.  Thank you for reading this, just a pound from everyone I’ve encountered in my life would be amazing to help my adopted family. I cannot thank you all enough ❤️❤️❤️❤️❤️❤️

Donations

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  • Anonymous 
    • £15 
    • 6 mos
  • Sharon Stone 
    • £10 
    • 11 mos
  • Rick Eckersley 
    • £10 
    • 11 mos
  • Nicola Fitzgerald 
    • £10 
    • 12 mos
  • Anonymous 
    • £10 
    • 13 mos
See all

Fundraising team: Team Sandra (3)

Nikki Houldsworth Swan 
Organizer
Retford, East Midlands, United Kingdom
Katie Culyer 
Team member
Tracey Probets 
Team member
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