A brave young girl battling a horrendous skin condition is excited ahead of going to secondary school. Casey Connors suffers from recessive dystrophic epidermolysis bullosa (EB).
The painful skin condition is caused by the lack of important proteins the body uses to bind layers of skin together and means the 12-year-old having to undergo painful bandage changes.
The arduous dressing changes can last up to three hours at a time but are needed to protect her skin, with 70% of her body covered in open wounds. And Belfast Live reports the Dublin-born youngster is preparing to face her next big challenge.
Later this year she will move from primary to secondary school. 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.
Her mum, Rachel Connors, said: “Casey is excited for this next step and feels completely ready, without seeing the challenges ahead as obstacles. It’s an enormous milestone in any child’s life, starting secondary school, let alone for someone living with EB.”
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.
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 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.
Alejandra Livschitz, Debra’s head of communications, said: “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.
“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.”