THE MOTHER OF a terminally ill 10-year old girl has appealed for help finding a home for her child’s palliative care so she can hold onto her for “as much as she can” for “whatever weeks, months or years” that she has left.

Speaking to Miriam O’Callaghan on RTÉ Radio 1 today Lynn Marie Walsh said she is doing everything she can to keep her daughter Jessica, who has Rett Syndrome, alive because she is not ready to let her go.

Lynn Marie and her son 14-year old son Elliot, are staying in the Ronald McDonald housing unit while Jessica receives palliative care in Our Lady’s Children’s Hospital in Crumlin.

This arrangement means that Elliot has to travel to and from school in Kildare every day.

The family had been living in a house in Newbridge but when Jessica’s condition deteriorated the house could not be adapted to meet her needs. 

Although Jessica qualifies for hours of nursing care, nurses cannot come to a house that is not adapted.

Lynn Marie said that all she wants is a house with a downstairs bathroom so Jessica can enjoy her time with her family and not have to live surrounded by strangers.

“Seeing her in a hospital, and I’m doing everything to keep her alive because I’m not ready to let her go, I just want to hold onto her as much as I can,” she said.

I need help to get her home for whatever weeks, months or years that I have her so that I can make whatever memories with my daughter. The last thing I want is to have memories of her in a hospital bed.

“I want to get a proper home, the palliative care that she needs, and that’s all I want but it’s like I’m not being listened to. The way I look at it, I’m not asking for handouts, I’m just asking the council to listen and understand that all I want is to bring her home to a house that’s adapted for her needs so that I can enjoy the time that I have with my daughter,” she added.

Lynn Marie explained that Kildare County Council has “a book on Jessica’s condition” but have said she has to wait until a house becomes available.

She said that she did not want to put her personal life out in the open but she was left with no alternative but to ask for help.

Making a difference

A mix of advertising and supporting contributions helps keep paywalls away from valuable information like this article. Over 5,000 readers like you have already stepped up and support us with a monthly payment or a once-off donation.

For the price of one cup of coffee each week you can make sure we can keep reliable, meaningful news open to everyone regardless of their ability to pay.

Support us Learn More