That’s the reality of living with the painful skin blistering condition EB. Maria was born with a severe form of recessive dystrophic EB – one of the most painful and traumatic skin diseases imaginable. It’s evident in the bandages on her arms and legs, the wounds on her face and the gloves she wears on her hands to delay the inevitable fusing. DEBRA Ireland support children like Maria every day.
Maria is like many other children her age. She loves drawing. She loves playing. And she is very excited to be starting school in September. From the time Maria was born, mum Gunita has been her primary caregiver. Administering excruciating, heart breaking bandage changes for her daughter. Giving her supplements in her feeding tube every evening. 365 days a year, without fail, and without a break.
Gunita doesn’t have support from her family. They live too far away.
“We don’t have grannies or sisters, or in laws. We don’t have them here. So, we have zero help. All these seven years, especially the last two years, I’m isolated with no conversations. It’s bad, so it was so important to have DEBRA.”
But, DEBRA Ireland has been there for Gunita since Maria’s first days in hospital when she was born. During the pandemic, although we weren’t able to have in-person visits, a family support team member was always at the other end of the phone when she needed them.
Starting school is a huge step for Maria and her family. They are all so excited – including Maria, but for her mum, Gunita, the thoughts of her little girl starting school frightens her. 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.
Gunita worries if the school will be equipped to handle all Maria’s medical needs? Will everyone in her classroom be gentle with her? Will Maria be safe?
The DEBRA family support team worked with the school for two years to prepare them for Maria. They created information booklets for Maria’s principal, teachers, classmates and their parents as well as a very special, personalised book which will be given to Maria’s classmates so they can get to know Maria and learn about EB.
“DEBRA has helped us move forward – everything improves bit by bit. Even if Maria’s condition doesn’t improve, it just improves our sense of life. They help us whenever we need anything.”
EB takes a tremendous toll on parents every single day. But your compassion will provide care for children and their families like Maria’s across Ireland.
DEBRA Ireland will be there through every obstacle and challenge. And with your support, DEBRA will always be there… for as long as they need us.
But we can’t do it without you. Together, we can make sure that no family will be left to face EB alone.