Girl with rare skin disease stars in book explaining disorder to classmates


A schoolgirl who suffers from a uncommon pores and skin illness has turn out to be the duvet star of a brand new e-book explaining the debilitating sickness to her new classmates as she begins faculty this week.

Maria Maciukas, from Dublin, can be waved off by her mom Gunita Spirge on her first day at a mainstream major faculty on Thursday.

The seven-year-old was born with the genetic dysfunction epidermolysis bullosa (EB), a situation also called Butterfly Pores and skin as a result of fragility of sufferers’ pores and skin.

She wants new bandages on daily basis to cowl her blisters, which might get away on the slightest contact.

Maria spent her first yr in school on the Central Remedial Clinic (CRC) in Clontarf, Dublin, the place there are specially-equipped school rooms designed to Help college students with medical wants.

After being enrolled at Scoil Bhride Cailini, a mainstream major faculty in Blanchardstown, Maria’s mom started to fret her little lady would battle in her new environment.

Media shortcode-Media-rebelmouse-image”>Media-library/maria-maciukas-preparing-for-her-first-day-in-a-mainstream-primary-school-with-mother-gunita-richard-sheehy-pa.jpg?id=31287169&width=980″ top=”3783″ id=”0509e” lazy-loadable=”true” width=”3026″/>Media Media-caption” placeholder=”add caption…”>Maria Maciukas making ready for her first day in a mainstream major faculty with mom Gunita (Richard Sheehy/PA)Media Media-photo-credit” placeholder=”add photo credit…”/>

“There was a lot of unknowns,” mentioned Latvian-born Ms Spirge.

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

Ms Spirge contacted EB charity Debra Eire for Help and so they determined to provide an illustrated information to EB particularly for employees and pupils at Maria’s faculty.

On the duvet of the brightly-coloured e-book, entitled Maria’s Story, is an illustration of the schoolgirl sporting butterfly wings and her bandages.

Inside, she is described as a bit lady who likes to snort and play however as a result of she was born with a uncommon illness, her fellow pupils are requested to be very cautious round her throughout classes and within the playground in case her pores and skin will get broken.

Her classmates and academics additionally study that though Maria wears bandages on daily basis, EB isn’t contagious.

Media shortcode-Media-rebelmouse-image”>The front cover of the book produced by Debra IrelandMedia-library/the-front-cover-of-the-book-produced-by-debra-ireland.jpg?id=31287170&width=980″ top=”910″ id=”eb43e” lazy-loadable=”true” width=”640″/>Media Media-caption” placeholder=”add caption…”>The entrance cowl of the e-book produced by Debra Eire (Debra Eire/PA)Media Media-photo-credit” placeholder=”add photo credit…”>PA Media – Debra Eire

Ms Spirge described the Help she and her household have obtained from Debra Eire since Maria’s prognosis as “invaluable”.

It could actually take as much as three hours a day for Ms Spirge to vary her daughter’s dressings.

“We don’t have grannies, sisters or in-laws. We don’t have them here,” she mentioned.

“They Help us whenever we need it,” she mentioned. “Whenever we need a chat, whenever we need anything, they are there.”

The charity’s household crew labored for 2 years with Maria’s new faculty and medical groups in preparation for her first day at senior infants.

Debra Eire chief govt Jimmy Fearon mentioned: “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 teams, therapists and everyone Maria needs to be safe.

“This does not happen easily.”

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