Emily, tells us about her son, Kylan.
When Kylan was born we could see straight away that something was wrong. He had missing skin on his forehead, nose and ears and his right foot was fully degloved. He also had blisters in his mouth and he had floating fingernails. I later found out that his father and I had a mismatched chromosome.
When Kylan was born I was only 18 in a small country town hospital that was an hour and half drive from my home. The Doctors there were baffled by his condition and I was terrified because nobody could tell me what the problem was.
Due to the lack of knowledge within the hospital that Kylan was born in, he was transferred to Wagga Wagga Base Hospital where we met with a paediatrician who was certain that Kylan had inherited Epidermolysis Bullosa. At that point, neither myself nor anyone in my family had ever heard of EB. Kylan was then flown to Sydney Children’s Hospital the next day, and was diagnosed with Recessive Dystrophic Epidermolysis Bullosa at just three days old.
We ended up spending 24 days at the Sydney Children’s Hospital before finally going home. Initially that time was spent doing a lot of tests and skin biopsies and spending time learning how to dress his wounds, how to pick him up, how to change his dressings, plus learning about EB in general. I couldn’t breastfeed him because his skin was so sensitive he had formed blisters in his mouth.
As a baby Kylan was very settled and placid – until the wound dressing started. I had to give him bleach baths, which I didn’t start straight away, but I had to do them every time I changed his dressings.
In terms of milestones, he has reached the majority of them on time. I had to put knee pads on his knees when he started crawling and his feet became affected when he started walking. Thanks to DEBRA Australia he has special shoes to help manage the blisters on his feet. He also has a Nano Bubble Machine, which sends millions of micro bubbles into the water while he is having a bath. The bubbles help circulate the water and help keep infections away from his skin.
His most affected areas are definitely his feet and hands. His throat is also affected and he may have to have surgery for the webbing between his fingers. I have to be careful regarding how I pick him up, what toys he plays with and what clothes he wears. He is such a placid and gentle little boy though – with a bit of an attitude. He gives lots of cuddles and is definitely a Mummy’s and Nannie’s boy. He currently loves Paw Patrol and is also obsessed with emergency service vehicles like ambulances, fire trucks and police cars.
Kylan now goes to daycare two days a week and the teachers are amazing. They know his boundaries in terms of what he can and can’t do and they converse with his Occupational Therapist. He has a little group of friends and likes to play with the older kids. He’s very good at knowing his limits, he’s very cautious of his surroundings and is in tune with his pain.
Looking to the future, his condition will get worse and we will have to manage it as he gets older. I’m looking at around 2024 for schooling, with the same system we currently have for daycare in terms of his OT liaising with the school.
I’m so grateful for the support I receive from DEBRA Australia. They help me with his dressing scheme and help out with anything and everything they can relating to Kylan.
