A Dublin schoolgirl has become the star of her own book which will help teach her new classmates about her agonising rare skin disease.
Maria Maciukas, 7, will start her first day in her new primary school, Scoil Bhride Cailini in Blanchardstown, this Thursday. She was born with the genetic disorder epidermolysis bullosa (EB) – a condition also known as ‘Butterfly Skin’ due to the fragility of patients’ skin.
Little Maria needs new bandages to cover her blisters every day. The blisters can break out at the slightest touch.
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She spent her first year at school in specially-equipped classrooms at the Central Remedial Clinic (CRC) in Clontarf, Dublin, and her mother Gunita began to worry her little girl would struggle in her new surroundings.
She said: “There were a lot of unknowns. Will this really work out?
"There are so many medical challenges with her condition. And everyone in her classroom needs to be very gentle.”
So DEBRA Ireland decided to create a unique illustrated guide to EB called ‘Maria’s Story’, for staff and Maria's fellow pupils. Maria is wearing butterfly wings on the cover, while in its pages she is described as a little girl who likes to laugh and play.
But because she was born with a rare and incurable disease, her new classmates are asked to be very careful around her in case her skin gets damaged. Her new pals and teachers also learn that even though Maria wears bandages every day, EB is not contagious.
Gunita, who is originally from Latvia, described the help she and her family has received from DEBRA Ireland since Maria was diagnosed, as invaluable. She added: “We don’t have grannies, sisters or in-laws. We don’t have them here.
“Even if Maria’s condition doesn’t improve, DEBRA helps to improve her quality of life. They help us whenever we need it. Whenever we need a chat, whenever we need anything, they are there.”
DEBRA Ireland’s Family Support Team have worked with Maria’s new school and medical teams for two years in preparation for her first day at senior infants.
DEBRA Ireland CEO Jimmy Fearon said: “Maria is moving from a school equipped to handle almost every medical need she has, to a school where, up to now, there was nothing in place. We worked with the school, connecting them with medical ams, therapists and everyone Maria needs to be safe – this does not happen easily.
“Our role is to provide support to those families affected by, or living with, EB in Ireland and improve their quality of life.”
For more information about EB and to donate to DEBRA Ireland, click here.
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