Schoolgirl with EB prepares for leap into secondary school

A Dublin schoolgirl born with the most severe form of a genetic skin condition, is preparing to make the leap to secondary school. 

Casey Connors, 12, has a daily battle with recessive dystrophic epidermolysis bullosa (EB), caused by the absence of essential proteins that bind the skin layers together.

She endures 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 this Friday (Feb 28), Debra, the national charity which helps the on average 300 people with EB, is highlighting how routine steps in life are huge leaps for people living with the agonising condition.

Casey pictured several years ago with mum, Rachel Connors. Pic. Richard Sheehy

“Casey is excited for this next step and feels completely ready, without seeing the challenges ahead as obstacles,” said her mum Rachel Connors, who lives in Clondalkin.

“It’s an enormous milestone in any child’s life, starting secondary school, let alone for someone living with EB.”

Rachel previously abseiled from the roof of Croke Park to raise vital funds for the charity and show her daughter it is OK to do things that scare you.

Debra has been working with Casey’s primary school, St Ronan’s NS, in Clondalkin, and secondary school since last year to make the transition as smooth as possible.

It means all staff and pupils will be informed about EB ahead of Casey’s arrival.

This has involved meetings with Casey’s teachers, SNAs, Community Nurse, Occupational Therapist and healthcare professionals from Crumlin Hospital.

Over 1,200 messages of support from the public have already flooded in on Debra.ie, wishing Casey well ahead of her big move in August.

“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, Head of Communications at Debra.

“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.”

Casey and her family have decided not to reveal the secondary school’s name, so that she can introduce herself and her genetic condition to her classmates on her own terms – with the help of Debra.

As part of introducing her to her classmates, a two-minute animated video will explain in simple language what EB is and how it affects Casey’s life.

If this pilot video is successful, it will give Debra another resource to help other children with EB to ease into secondary school.

Over 300 million people worldwide and some 300,000 In Ireland, live with a rare disease, including EB.

To share your words of encouragement with Casey ahead of Rare Disease Day, visit Debra.ie.