A Dublin girl born with the most severe form of butterfly skin is excited as she prepares to go to secondary school.
Casey Connors, 12, who lives in Clondalkin, has a daily battle with recessive dystrophic epidermolysis bullosa (EB), caused by the absence of essential proteins that bind the skin layers together.
She goes through painful bandage changes that can last three hours at a time but which are needed to protect her skin, 70% of which is covered in open wounds.
Now, she is preparing to face her next big challenge – the move from primary to secondary school later this year.
Ahead of Rare Disease Day on Friday, Debra, the national charity for EB, is highlighting how routine steps in life are huge leaps for people living with the painful condition.
“Casey is excited for this next step and feels completely ready, without seeing the challenges ahead as obstacles,” her mum Rachel Connors said.
Ms Connors had previously abseiled from the roof of Croke Park to raise vital funds for the charity and to show her daughter it is okay to do things that scare you.
“It’s an enormous milestone in any child’s life, starting secondary school, let alone for someone living with EB.”
Debra has been working with Casey’s secondary school and primary school, St Ronan’s National School in Clondalkin, to help make the transition as smooth as possible.
Casey and her family are not revealing the secondary school so that she can introduce herself to her classmates on her own terms.
All staff and pupils will be informed about EB ahead of Casey’s arrival in September.
This has involved meetings with Casey’s teachers, special needs assistants (SNAs), a community nurse, an occupational therapist and healthcare professionals from Crumlin Hospital.
A two-minute animated video will be used to help explain in simple language to Casey’s classmates what EB is and how it affects her life.
If this pilot video is successful, it will give Debra another resource to help other children with EB to ease into secondary school.
“It might seem premature that we are talking about Casey’s shift to secondary school six months out but planning for her move began last year,” said Alejandra Livschitz, Debra’s head of communications.
“Our family support team has been collaborating with her family, school and medical team to ensure that Casey has a strong support system in place as she enters first year.”
More than 300 million people worldwide and some 300,000 In Ireland live with a rare disease, including EB.
