Maria’s story: Girl with rare skin disease stars in book explaining disorder to classmates

A brave schoolgirl diagnosed with a rare skin disease has become the cover star of a specially created book produced to teach her new classmates about her agonising illness

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Maria Maciukas will be waved off by her mum Gunita as she begins her first day in a mainstream primary school on Thursday. (Sep1) 

The seven-year-old was born with the genetic disorder epidermolysis bullosa (EB) – a condition also known as ‘Butterfly Skin’ due to the fragility of patients’ skin. 

Every day, she needs new bandages to cover her blisters, which can break out at the slightest touch – and she spent her first year at school in specially-equipped classrooms at the Central Remedial Clinic (CRC) in Clontarf, Dublin. 

But after being enrolled at Scoil Bhríde Cailíní in Dublin’s Blanchardstown, Latvia-native Gunita began to worry her little girl would struggle in her new surroundings. 

“There was a lot of unknowns,” she said.  

“Will this really work out? There are so many medical challenges with her condition. And everyone in her classroom needs to be very gentle.”  

After she asked national EB charity DEBRA Ireland for help, a unique illustrated guide to EB, ‘Maria’s Story’, was produced. 

On the cover of the brightly coloured book, she is shown wearing butterfly wings, 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 uncurable disease, her new classmates are asked to be very careful around her during lessons and in the playground in case her skin gets damaged and blisters.  

Her new pals and teachers also learn that even though Maria wears bandages every day, EB is not contagious.  

Gunita described the help she and her family has received from DEBRA Ireland since Maria was diagnosed, as invaluable.  

“We don’t have grannies, sisters or in-laws. We don’t have them here,” explained Gunita, who can spend up to three hours a day changing her daughter’s dressings.  

“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 worked for two years with Maria’s new school and medical teams in preparation for her first day at senior infants. 

“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,” said DEBRA Ireland CEO, Jimmy Fearon. 

“We worked with the school, connecting them with medical teams, 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, visit: 

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