The mother of a teenage girl born with the incurable ‘Butterfly Skin’ disease today opened up on a “nightmare” battle for increased nursing support.
Liz Collins’ 18-year-old daughter was diagnosed with recessive dystrophic epidermolysis bullosa (EB) shortly after birth and her fragile skin blisters inside and out at the slightest touch.
Every day, she requires fresh bandages to prevent infection – which Ms Collins describes as a “horrific” four-hour ordeal.
In an emotional address to DEBRA Ireland as part of EB Awareness Week, starting tomorrow (Oct 25), she said she has been “18 years looking for proper supports for my child”.
“No one has any idea what it is like to inflict pain on your daughter for four hours. It is just relentless,” she said.
“Nursing care at home for me and my family is the most important thing around EB.”
Although her family has benefited from nursing visits to help with her daughter’s treatment, Liz is backing DEBRA Ireland’s call for increased Government investment for nursing home care to support people and families living with EB.
“I have been so disheartened over the years, just constantly trying to access services,” she said.
A pre-Budget submission by DEBRA Ireland calling for €1million to be invested in home care, outreach care and mental health supports for children and adults with EB, went unheard by the Government.
The charity is now asking members of public to support it in calling on Minister for Health, Stephen Donnelly, to prioritise funding for EB care.
Describing daily bandage changes as “unmerciful”, Ms Collins said having nurses provide bandage changes at home has been “a game changer” for her family.
“As a mother, it is extremely difficult to sustain a lifetime of dressing wounds every single day, day in and day out. It’s just not possible for us,” said the mum, from Terenure in Dublin.
Nursing supports give her “more time to be a proper mother to my daughter”.
“The nurses become part of our family. They have built up a relationship with my daughter. They are much more than nurses. There are angels in disguise.
“I know there is someone watching with vigilance around aggressive skin cancer or to see if she has an infection that could turn into sepsis, which could kill her.”
However, she says the service is “fragile” and involves having to fight to get nursing hours approved against the backdrop of a nursing shortage.
“We need further support, we need people in our corner and we need to keep fighting for the correct services for our patients.
"She already knows she has another big battle on her hands as she has nowhere to transfer to as there is no adult consultant so she can’t transfer to adult services.”
"Nursing care at home is essential to protect the health and wellbeing of children and adults with more severe forms of EB,” said Joanna Joyce, Advocacy Manager with DEBRA Ireland.
“No parent should be forced to provide this complex care themselves due to a lack of resources. As part of EB Awareness Week, we need to raise our voices and fight for better care and support for families living with EB.”
For more information on EB and EB Awareness Week, see debraireland.org.
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