A family who say the Irish medical system has “overlooked” their 6-year-old daughter’s “urgent” need for surgery have launched a campaign in hopes of raising funds to have the little girl treated overseas.
The parents of Roxanna Kelly say their daughter was born with a rare condition called Arthrogryposis, which severely impacts her physical movement in all four limbs, resulting in her being unable to sit-up, stand, or feed herself.
They are hoping to raise €180,000 in order to bring Roxanne – who is a twin – to Florida to receive treatment that they hope will improve her quality of life.
The family believes that Orthopaedic Surgeon Dr. David Feldman MD of the Paley Orthopaedic and Spine Institute in West Palm Beach, Florida is the best chance Roxanne has at getting the treatment they say she needs.
So far the campaign has raised €74,655 from approximately 1,500 donations.
Roxanne pictured with her twin brother, Curtis.
Máirín Nolan and Declan Kelly say that their child has been on a waiting list in Ireland over the past 4 years which led them to seek out a second opinion relating to her condition and treatment plan.
They say the long wait for surgery on her arms and legs has been “difficult” for the little girl who gets around with the aid of a motorised wheelchair which she can control by tilting her head.
“We believe her needs are too complex and she is not getting the care she needs here in Ireland,” they said.
The family say the results of a recent MRI show that Roxanne has a Chairi 1 malformation meaning her brain does not fit in the skull and has to move out along the spinal cord.
The test also found a large spinal arachnoid cyst with spinal cord compression which the family say is putting severe pressure on her spine and interfering with spinal signals from her brain.
Roxanne’s family are hoping to raise €180,000 “to cover the appointments and surgeries required and we have already booked our appointment in the Paley Institute in Florida.”
They say that they were left with no option but to try a gofundme campaign as they cannot foot the costs of the treatment by themselves, saying that “the Irish healthcare system will not provide any assistance here, or for us to go abroad.”
They say costs associated with staying in Florida are also a concern.
“Any contribution, no matter how small, will make a significant difference to our mission. Your generosity will help us provide the surgery Roxanne needs to relieve the pressure on her spine and brain. We understand that some may not be in a position to donate, but perhaps you could consider sharing this message with your friends and family to help spread the word.” the family stated.