"From the moment Albi entered this world, we have all been on quite the journey…"

Meet Albi, our eight-month year-old bundle of joy, facing the relentless challenges of severe recessive dystrophic epidermolysis bullosa (RDEB severe). The slightest knock or friction caused by normal every day activities causes his skin to blister. His EB affects him both internally and externally, meaning blisters also form on his eyes, mouth and oesophagus. Despite facing the endless challenges his condition creates, and even though he is in constant pain, Albi radiates joy with a smile that lights up every room. We need your help to ensure Albi and others living with EB get the enhanced care and support they need today.

When Albi first entered this world, the journey was daunting. His tiny little legs, red and raw hinted something wasn’t right, but with the support of specialists and DEBRA UK, we found relief and answers. DEBRA UK, through its Community Support Team, led by David, has been a lifeline for us. They work in tandem with specialist EB nurses and healthcare professionals to improve quality of life for children like Albi. They provide invaluable items, such as sheepskin liners for Albi’s crib and inserts for his car seat, a simple yet life-changing solution that alleviates his pain. This was our first insight into what DEBRA UK can do to support us and help improve Albi’s quality of life today.

As Albi grows and begins to explore the world, we take comfort in knowing that DEBRA UK will continue to stand by us, providing everything from seamless soft stretch baby clothes, to travel assistance for urgent hospital appointments and advocating for Albi when he starts at school.

Albi’s journey is just beginning, and we invite you to be part of it and to BE the difference for EB today. EB is a life-long condition and there are no cures, but your support will make a huge difference to families like ours facing the challenges of EB. It helps us access the specialist items we so desperately need to enhance quality of life for Albi and provide comfort during his courageous journey. Your donation creates a brighter future for Albi and thousands of other children and families living with the pain of EB.

Will you BE the difference for EB and support children like Albi today?

 

DONATE TODAY

 

If you would prefer to donate by text, please text ALBI followed by your donation amount to 70490 to give that amount.

Texts will cost the donation amount plus one standard network rate message, and you’ll be opting into hearing more from us. If you would like to donate but don't wish to hear more from us, please text ALBINOINFO instead.

Thank you,

Erin and Calum,

Albi’s proud parents

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*Monies raised will be used to improve quality of life for people living with EB.