Fundraising appeal for brave Roxanne
Roxanne controls her wheelchair by tilting her head
A Carlow mum has made an impassioned plea for help to fund urgent medical treatment for her daughter.
Roxanne Kelly is six and is the big sister, by all of one minute, to twin brother Curtis. She was born with a rare condition called Arthrogryposis, which severely impacts her physical movement. She cannot walk, crawl, sit, stand or feed herself. She rolls on the floor at home to play and move about.
Despite these difficulties, Roxanne’s condition has never held her back.
Speaking to The Nationalist, her mum Máirín described little Roxanne as “fun-loving, outgoing, extremely intelligent, energetic and happy”, adding that “she has a love for life and lights up our lives and those of everyone she meets”.
Roxanne’s cognitive function is perfect. She attends Gaelscoil Eoghain Uí Thuairisc, where she’ll start senior infants in September. When out and about, Roxanne uses a customised power wheelchair that she controls by tilting her head.
“She’s super-speedy and brings her brother down to school on the back of her wheelchair,” said Máirín, adding that the pair are best friends and do everything together.
Having been on a waiting list for surgical intervention in Ireland for over four years, the family sought a second opinion on Roxanne’s care from the Paley Orthopedic & Spine Institute, a world-renowned medical centre. The family travelled to the clinic’s European centre in Poland, where Máirín said “there was an instant level of care, understanding and an urgency to help Roxanne improve her quality of life and her future”.
An MRI found that Roxanne has a ‘chiari malformation’, a condition in which brain tissue extends into the spinal canal. She also has a large thoracic arachnoid cyst. Her spinal cord is compromised, putting her at risk of neurological damage, including paralysis, chronic pain, bladder and bowel dysfunction and permanent deformities. Doctors stressed that the situation is urgent and requires immediate treatment.
Máirín described the severity of the condition as “heartbreaking and frightening” and feels that the Irish healthcare system has overlooked Roxanne.
“We believe her needs are too complex and she is not getting the care she needs here in Ireland; with little communication or help here, we have decided to go ourselves to the Paley Institute in Florida for the urgent treatment required. This was not an easy decision for our family, but this is the best outcome for Roxanne,” she explained.
The family have set up a GoFundMe page to help raise the €180,000 needed to cover appointments, surgeries and accommodation. Máirín says “this is not something we can provide and the Irish healthcare system will not provide any assistance here, or for us to go abroad. 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”.
In a statement issued to The Nationalist, Children’s Health Ireland (CHI) said it ‘cannot comment on individual cases. Even if a family decides to make their story public, we are still bound by patient confidentiality. The patient’s clinical team can speak to the family directly to explore all treatment options available’.
Those wishing to donate can do so at Fundraiser for Roxanne Kelly (gofundme.com).
