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'Pandemic has cut off almost all support for Molly' - parents

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Mairead and Molly Jones, who suffers from Ring chromosone 18

Mairead and Molly Jones, who suffers from Ring chromosone 18

Mairead and Molly Jones, who suffers from Ring chromosone 18

The parents of a nine-year-old girl with a rare life-limiting condition say they have lost virtually all their support services due to the pandemic.

When Molly Jones was born in December 2010 she struggled to breathe and, in the days that followed, her parents were given no hope of her survival.

The 6lb baby defied the odds to grow into a fiercely determined young girl with a huge personality.

Her condition, however, Ring chromosome 18, has left her with profound disabilities that need round-the-clock care.

Her parents, Barry and Mairead, are now juggling their frontline roles as community support workers with the full-time care of Molly and their two other little girls, Elsie and Cara, as routine respite is no longer operating due to Covid-19.

However, they are comforted by the back-up of Ireland's only children's hospice, LauraLynn.

"Mairead and I are still in work, caring for adults with intellectual disabilities," said Mr Jones.

"We work opposite shifts. We're conscious of what we could bring back to the house.

"If we did contract Covid-19, it is a great comfort to know LauraLynn would help us.''

LauraLynn has launched a Crisis Care Appeal in response to the hit on fundraising caused by Covid-19 as the charity is projecting a 54pc loss in funding.

Difficult

End-of-life care and crisis care continues to be offered at the hospice but planned routine respite nights and short family stays have been put on hold.

Mr Jones said the virus has meant most of their day-to-day help with Molly has had to stop.

"It has been extra difficult because we would get support from LauraLynn, we get support from Molly's school, the Carmona School in Glenageary, we get some from John of Gods, some input from Jack and Jill and that's all gone now," he said.

"LauraLynn did give us a couple of hours one day and even for that one day, it was great."

From the moment she was born, he said they were told by doctors to build precious memories with their daughter.

"Molly has a heart condition, liver disease. Molly is anaemic, she has scoliosis, she has moderate hearing loss, a lot of sight issues, a cleft palate," he said.

"She is about the size of a three-year-old, around 16kg. She has severe intellectual disability, some behavioural issues."

However, he stresses her long list of medical ailments do not do justice to his tiny daughter with a huge personality.

"She's had over 30 general aesthetics for different procedures. She nearly has a consultant for every little bit of her body. It is difficult for her."

He said they feel safe in the knowledge that LauraLynn will be able to care for Molly if he or his wife did fall ill during this time and is appealing to the public to help support the vital services carried out by the hospice.

To donate, go to: lauralynn.ie/donate .