LauraLynn ‘a great comfort’ to parents amid pandemic

The Jones Family. Pic: LauraLynn.

When Molly Jones was born, her parents received the devastating news that her chances of survival were extremely slim.

Despite having a rare condition called Ring Chromosome 18 syndrome, together with global developmental delay and a serious heart condition, Molly, 9, has proved everyone wrong.

Her parents, Barry and Mairéad, from Shankill, Dublin, are among 220 families currently relying on Ireland’s only hospice — LauraLynn — to provide crisis care for their their daughter. They also have two younger daughters. Cara, 6, and Elsie, 5.

LauraLynn, a purpose-built eight-bed hospice in Leopardstown, Dublin, has suspended all planned routine respite nights and short family stays because of the Covid-19 restrictions.

However, it continues to provide end-of-life care and crisis care stays for children whose primary carer has been impacted by the virus.

Children such as Molly are at risk of the more severe effects of Covid-19, and her parents worry what will happen to her if they contract the virus.

Molly, who only weighs 16kg, is very small for her age. She has feeding difficulties, is non-verbal, and her sight and hearing are impaired.

“Mairéad and I are still at work, caring for adults with intellectual disabilities,” said Barry. “If we did contract Covid-19 it is a great comfort to know that Laura-Lynn would be there to help us.”

It costs more than €5m a year to keep LauraLynn open, €4.6m of which must come from fundraising income, which is expected to fall by over 50% this year as a result of the pandemic.

As well as end-of-life care, LauraLynn provides a range of services including symptom management for children, music and play therapy, psychological support, family and sibling camps, and short breaks.

Barry is one of hundreds of parents who took on the challenge of completing 3,000 press-ups over 30 days this month to raise funds for LauraLynn. He has already raised more than €2,000 from friends and family but is now reluctant to ask people to sponsor him because he knows that many people are out of work.

He and Mairéad work different shifts in their roles as social care workers at Sunbeam House in order to care for their children.

Barry said: “We are both happy that we are still able to work and earn money but we have to be as careful as we can be to protect Molly because we would be extremely worried if she became infected with Covid-19.”

Molly’s sleep patterns can change and her parents are grateful that they can rely on LauraLynn to mind her for a few nights when they become extremely exhausted.

“She is a generally happy child,” said Barry. “She also has a wicked sense of humour and is very determined but that sometimes gets lost when you talk about the medical stuff and the difficulties.”

Ann Booth, clinical nurse specialist at LauraLynn, said LauraLynn is providing virtual supports to their families and also has a 24/7 nurse helpline in operation.

“It is vitally important that we continue to be there for our children and families during this challenging time,” said Ms Booth.

Since opening in 2011, LauraLynn has cared for more than 450 children and their families. The charity also provides bereavement supports to families after they have lost a child.