Urgent Call To Help Roxanne

Dear friends, family, and compassionate strangers, I am reaching out with a plea for help. Please help our little girl Roxanne get the urgent medical treatment she needs.

Overview of Roxanne’s Journey

On the 20th of May, 2018, my daughter Roxanne and son Curtis were born. Roxanne 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. Having been on a waiting list in Ireland for over four years, we decided to seek a second opinion relating to her condition and treatments. After much research, we came across Dr. Feldman MD of the Paley Orthopaedic and Spine Institute 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. Dr. Feldman and the Neuro Surgeon Dr. Asadi expressed that this is an extremely urgent issue that requires immediate treatment. This was heart-breaking information for us to learn due to the severity of the condition.

With this new information now available, the Irish healthcare system had overlooked these concerns. Having waited so long with little communication or help in Ireland, we have decided to go ourselves to Florida for the urgent treatment required. This was not an easy decision for our family, but this is the best outcome for Roxanne.

Read the full details of Roxanne’s condition below.

Who is Roxanne?

Roxanne is now 6-years-old and is the big sister (by all of 1-minute) to her twin brother, Curtis. They are best friends and they do everything together. Roxanne and Curtis also have an older brother, Ryan, who they both look up to greatly. Roxanne’s condition has never held her back, she is extremely intelligent and energetic. She has a love for life and lights up our lives (and everyone else who meets her). She loves to paint, and especially loves unicorns and fairies; she is a real girly girl. She is very patient with everything she commits herself to – you’d be surprised how much she can achieve with her lack of flexibility.

We hope to update some of her paintings and projects here too.

She was very excited when she recently receive her customised power wheelchair which she controls by tilting her head. The trouble now is slowing her down as she tries to impress people by whizzing past or spinning in circles whenever we leave our home. Her brother, Curtis, stands on the back of her wheelchair and she gives him a lift to school and home every day, much to the amusement of people that pass us by.

What is Roxanne’s Condition?

Roxanne was born with a disability called Arthrogryposis, a rare condition which affects every aspect of her life.

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 customised 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.

Roxanne has been under the care of Temple St. Children’s Hospital since birth. Although the care they have provided has helped her, she has been on a waiting list for surgery on her legs and hips for four years now. This becomes more difficult the older she gets. We believe her needs are too complex and she is not getting the care she needs here in Ireland.

After much research, we decided to go abroad to a specialist in Arthrogryposis, Orthopaedic Surgeon Dr. David Feldman MD of the Paley Orthopaedic and Spine Institute in West Palm Beach, Florida. Dr. Feldman brings over 25-years of experience in paediatric orthopaedics, spinal deformity and joint preservation to his practice and specialises in Roxanne’s condition.

After our initial zoom appointment with Dr. Feldman, we decided to have an in-person appointment with him. We travelled with Roxanne to the Paley Clinic in Poland and we instantly seen a different level of care and understanding, and an urgency to help Roxanne improve her quality of life and her future.

As she has scoliosis, the initial part of Dr. Feldman’s medical plan was to have a full MRI of the spine. This was to rule out any issues with the spine before making a plan for leg and hip surgery. The leg and hip surgery would allow Roxanne to be weight bearing on her limbs which would drastically improve functionality and her independence and would avoid the need to be hoisted every time she moved in and out of her wheelchair, i.e. to take a bath, or move into bed (and many other day-to-day activities) for the rest of her life. The surgery would also allow

Roxanne to sit upright which would be another huge improvement in her quality of life in the future (meaning she could sit upright in a car or at home).

The Paley Clinic put us in touch with families who have been through this and now their child can take steps and some can even walk post-surgery. This gave us such hope and joy, but sadly it was short-lived when we received the results of the MRI scan.

Results of the MRI Scan

The Irish healthcare system did not contact us with any diagnosis or results from the MRI, so we requested the scan result be sent to us and we sent them directly to Dr. Feldman. On examining the MRI he found some very serious issues.

1) Chairi 1 malformation; where the brain does not fit in the skull and has to move out along the spinal cord.

2) Large spinal arachnoid cyst with spinal cord compression; putting severe pressure on her spine and interfering with spinal signals from her brain.

Our family are heartbroken and very frightened to have learned that this has been found.

Medical Treatment Required for Roxanne

Roxanne needs urgent medical attention and surgery to stop her regressing in the future and to prevent neurological demise. Dr. Feldman and the Nero Surgeon Dr. Asadi want to see her to run their own tests and to treat her as soon as possible.

We began this journey hoping to provide Roxanne with a better quality of life with hip and joint surgery that would allow her to be weight-bearing on her limbs and sit upright. This will now be on hold due to the results of the MRI scan which requires urgent action.

We hope to get the surgery on her limbs in the future, but now our priority is to fly to the Paley Orthopaedic and Spine Institute in Florida so they can examine Roxanne in-person and begin the surgery detailed above.

How YOU can Help

We 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. Although we had no intentions of utilising GoFundMe, this is not something we can provide and the Irish healthcare system will not provide any assistance here, or for us to go abroad. We must also stay in Florida with Roxanne for this duration.

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.

If you feel like you can assist us in a more direct way, you can contact me directly.

Publishing Updates

We will provide updates on Roxanne’s progress throughout the treatment and how the funds are being used. We want to ensure supporters of Roxanne that the donations are being used to drastically improve her future.

A Sincere THANK YOU

We want to thank everyone for their support and kind words. 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.

Thanks again, from Eileen Byrne Auntie of Roxanne Kelly and Beneficiary who will be overseeing management and withdrawal of the funds to pay for Roxanne's surgery .

Máirín & Declan Kelly, Roxanne’s mum & Dad