Team Albi - Kenya Trek for Epidermolysis Bullosa

Thank you so much to everyone who came to Albi’s Butterfly Ball in aid of DEBRA UK! It’s taken until now to write this post, as we’ve been celebrating Albi’s 1st Birthday 🎈 We are so overwhelmed with how fantastic the evening was which wouldn’t of been possible without everyone’s support.

We are extremely proud and grateful to announce that our final total from Albi’s Butterfly Ball🦋 is an incredible £42,186.49

We would like to say a special thank you to our Headline Sponsor - Smart BodyShop Solutions group, I hope yourselves and your team had a fantastic evening!

A thank you to Mark Johnson at Mirror Image Accident Repair Centre one of our Gold sponsors and finally MW Vehicle Services Ltd being our second gold sponsor. Without you our event wouldn’t have been possible!

A massive thank you to an incredibly generous donor who topped up the amount we raised on the night with an anonymous donation of £16,610.
Finally we would all like to say thank you to everyone who has supported us since Albi was born, one year ago today 💙🦋

More photos to follow!

Albis Butterfly Ball in Aid of  DEBRA UK - The Butterfly Skin Charity is less than 2 weeks away ! 

This will be a fantastic evening of entertainment which is completely SOLD OUT , where we will be continuing to raise the awareness of Epidermolysis Bullosa for Albi and all EB suffers.
Our goal is to raise the  much needed awareness and funds as possible to support DEBRA UK, allowing them  to continue investing in their drug repurposing clinical trials that are so important to ensure that in the future there is an effective drug treatment that can support all types of EB which is a dreadful & painful condition.

As a family we are so grateful for all the support and awareness that has been shown to date. Please see our link if you wish to support us in our mission to find a cure and raise awareness of EB.

All money raised on the evening of Albis Butterfly Ball will be totalled up and shown on the below link/page:

donate.giveasyoulive.com/fundraising/team-albi-kenya-trek-for-epidermolysis-bullosa

Team Albi - just under 5 months until we trek 5 days through Kenya in aid of DEBRA UK - The Butterfly Skin Charity -so training is now starting to ramp up to ensure we complete the challenge in one piece.

Albi was born with Severe Recessive Dystrophic Epidermolysis Bullosa RDEB-GS.
It is a very rare genetic disease that effects Albi both internally and externally. Albi is essentially missing the *glue* (technically known as collagen 7) which attaches the skin to his body; the slightest bit of friction will cause his skin to blister and/shear.
Albi was born with significant skin loss at birth, he has to have daily dressing changes to help his wounds to heal and the minimise infections. Albi will wear bandages every day to help protect his skin and reduce new wounds and blisters caused by everything day friction.

EB is such a rare genetic disease where there is currently no cure or real treatments . With severe cases like Albi’s this is usually fatal in their 20s to 30s  as they - this is why fundraising is so important to help better the lives of those living with EB raising awareness and funds is critical to #StopThePain  that Albi and others born with EB suffer everyday,