Six-year-old Roxanne Kelly’s diagnosis means she is unable to sit up, stand or feed herself and uses a motorised wheelchair which she controls by tilting her head.
Roxanne’s parents say that as their daughter had been on waiting lists back home for over four years, they decided to seek a second opinion from Dr Feldman, an orthopedic specialist based in the US.
"Although this was a blessing, it sadly brought bad news for us. Dr. Feldman requested an MRI scan and the results showed that Roxanne has chairi 1 malformation and a large spinal arachnoid cyst with spinal cord compression."
The family was heartbroken to learn how severe little Roxanne’s condition was and were told that this development was an extremely urgent issue that would require immediate treatment.
Roxanne’s family has described Arthrogryposis as a rare condition "which affects every aspect" of Roxanne’s life.
They added: "She cannot walk, crawl, sit or feed herself because of her condition. She rolls on the floor at home to play and move about and has a customized power wheelchair to get around when outside. She is intellectually age-appropriate and goes to school in Gaelscoil Carlow along with her twin brother, Curtis."
Deciding to travel to Florida for treatment, Roxanne’s family set up a GoFundMe in hopes of raising €180,000 to cover the appointments and surgeries at the Paley Institute, in Florida.
They say that the treatment and surgery is vital in preventing their little girl from "regressing in the future and to prevent neurological demise."
With €74,645 raised of their €180,000 goal so far, they thanked the community for supporting them, writing: "It is a difficult time for our family and the support we have received from everyone has been heart-warming. Although it will be difficult, with your help we can make such a difference to Roxanne’s future."
Providing an update on her health journey on August 12th, Roxanne’s Mum Máirín says they have flown to Florida and are now undergoing clinical appointments, emphasizing that the public’s donations are "the reason we are here and getting her the care she needs."
You can find Roxanne’s GoFundMe page here.
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