Albi
Category
Faces of EBAbout This Project
Our little boy Albi was born with severe Recessive Dystrophic Epidermolysis Bullosa (RDEB). Despite all the pain and suffering he deals with every day, he will always give you the biggest and best smile.
Albi’s day starts once his overnight feed finishes – he’s tube fed as his mouth is very sore and he suffers with blistering and strictures in his oesophagus. Mornings are super busy for us. It takes us about an hour to give him his medicines, change his clothes and nappy, and lance any blisters that have appeared during the night. By the time all that is done it’s already time for his first feed of the day.
During the day, Albi likes to play and interact like any other baby and, with some forward planning, I do my best to make sure we can get involved with everything such as baby classes. I carry a sheepskin rug and silk sheets everywhere we go – this means that I don’t have to worry about where I’m going to put him down or how I’m going to change his nappy. Leaving the house can be exhausting, especially with all the things we’ve got to take, but it’s worth it as Albi loves meeting new people.
EB affects the whole family. It's been a massive thing for everyone to learn about and understand. As you'd expect, everyone was so excited to have a cuddle with the new baby in the family, but for Albi and those living with EB, it's not so simple.
Once Calum gets home from work, we do Albi’s bandages. We do them almost every day; bathing is very tricky whilst he is so small as he likes to kick around a lot. It takes the two of us to bath and change his bandages to minimise any skin damage and this usually takes us around two hours. It is extremely painful and distressing for him, he is prescribed strong painkillers but they are often not enough.
EB affects the whole family. It’s been a massive thing for everyone to learn about and understand. As you’d expect, everyone was so excited to have a cuddle with the new baby in the family, but for Albi and those living with EB, it’s not so simple. It’s taken a massive toll on us as parents; making sure that we give Albi the best care possible is both physically and mentally draining. A new baby is hard, but with Albi and his incredibly fragile skin, there is no room for error.
I wish that everyone understood EB and took it seriously. We have to educate people everywhere we go. No matter how hard we try to educate medical professionals, more often than not, Albi leaves hospital with avoidable skin damage. As a family, we are trying our best to raise more awareness of EB, especially here in Wales.
My long term hope for EB research is a cure; but in the short term we hope for something to help protect the oesophagus and reduce inflammation. A way to speed up wound healing is incredibly important too – seven months on and the bend in Albi’s foot still hasn’t fully healed.
