Severe skin condition makes learning to walk agony for brave Casey (2)
A young mother has spoken of her little daughter's battle with an agonising skin condition.
Dublin mum Rachel Connors (24) said her heart breaks when she tries to ease the pain of her two-year-old daughter Casey.
Casey suffers from epidermolysis bullosa (EB) which causes her skin layers and internal body linings to blister and wound at the slightest touch.
Her painful wounds need constant bandaging.
"It's very tough. It breaks my heart half the time because she can get blisters in her eyes. When Casey gets them she can't open her eyes for a couple of days," said Rachel, speaking at her home in Clondalkin.
"When it happens, she can't see and she doesn't know where she is or who's here with her. I just have to sit with her and keep talking to let her know I'm there beside her," she said.
Rachel, who has a son Jayden (4) who is not affected by the condition, looks after Casey at her home in Glenfield, mainly with the help of visits from her mother Eileen, father Edward, and sisters. She also visits a clinic for nursing care.
Every day I have to watch Casey scream in pain from wounds she has created simply by learning to walk. The look of fear in her eyes when she sees me preparing for her bandage change breaks my heart," she said.
"She is too young to understand that the pain I have to inflict on her is keeping her alive; making sure that a new wound doesn't turn into an infection which would mean another visit to the hospital.
"I should be able to fix this, kiss it better. But I can't fix it," she said.
Rachel had to give up part-time work as a cleaner when Casey was born when the gravity of the condition was explained to her. Due to the presence of constant wounds, patients like Casey with a severe form of EB are also susceptible to a very aggressive form of skin cancer.
But despite the pain suffered by Casey, the little girl has shown she has a wonderfully resilient spirit.
"Casey can still laugh, still dance, and give me light hugs. Once she has her medicine, she can be one of the happiest children ever," said her proud mother.
Casey will be three years old next month and Rachel wants her daughter to receive approval for a special needs assistant next September to enable her to attend pre-school. Normally special needs assistants are not provided for pre-school attendance but Casey will be unable to attend without one.
The charity DEBRA Ireland is striving to fund research to find treatments and cures for EB and skin cancer. Information on funding the charity's work is on www.debraireland.org. The charity's half-marathon and 10km race in the Wicklow Mountains on March 8 will help fund its work.