Fundraiser for Beth

Beth is a six year old ballerina in training, chicken feeding expert, singer and dancer combo, and professional "bringer" of charm and laughs. She also has Down syndrome and cerebral palsy (CP). As doctors confirmed her CP the scans showed Beth also had Atlanto Axial Instability (unstable top of cervical spine) and more urgently, that she had a life threatening spinal cord compression. Without a number of major surgeries, Beth would become paralysed or die due to health complications. Ever since, my little friend has spent her time in the hospital and at home with constant care. No more trampolines or sand pits, "gentle dancing" only, and no horse riding or gymnastics, no more school.

Beth's first surgery was five hours long, completed in Perth in June 2014 to decompress and fuse her spine. After seven months in a traction brace (covering her from mid-chest up over her head with a cutout hole for her face, ears and arms), the surgery was deemed unsuccessful. It became evident Beth's case was too complicated for the level of expertise available in Western Australia. Although Beth is told the basic gist of what is going on, it's hard to put into words for a child. As her support worker, I've stood with her as she cries but encourages the doctors, the way we have encouraged her, to "try again" when they insert IVs, needles, and take scans—battles far too cruel for the little girl in the tutu.

Her parents, Jane and Martin, anxiously continued to network with disability contacts over East for a different surgical plan with recommended doctors. All the while Beth impressed us with her patience and regular excitement for the arrival of any and all visitors. With such a rare condition, the surgery was quickly booked in Sydney, and in the four weeks between, Beth mastered a quick bum-shuffle across the floor to avoid the fall that would leave her a ventilated quadriplegic.

Luckily, Beth loves planes and made it safely to Sydney Children's Hospital to meet the doctors who would remove the screws which were sitting precariously close to her spine, and re-fuse them to her head (using 8 large screws drilled into all sides of her skull) and spine (called an Occipital Cervical Fusion.) The risks were huge and Beth would require blood transfusions and a bone graft from her ribs into her spine to make a stable fusion. This time around the little trooper spent one day in Intensive Care compared to five days last time, and her wounds appeared to heal on schedule. She spent plenty of time resting, colouring and charming the nurses on the ward.

Over the course of these surgeries Jane has left work to provide full-time care, trying to juggle work one day a week between visits to Sydney for post-surgical updates. At home care has previously included checking for rashes/sores, releasing the surgical brace every four hours for a few minutes at a time, nursing for wound breakdown and performing sponge baths as the inside of the brace is lined with wool and cannot get wet. Beth has had pressure sores on her chin and forehead, extremely swollen lips from anxious chewing, but still for the second surgery she was a good sport for a head shave.

In recent scans it was noted that Beth’s fusion was again beginning to fail due to her hyper-flexibility and the complexities of keeping an active child still. On August 24th doctors will again perform a 4-6 hour surgery to reinforce her spine so she can continue to be the happy dancer we all love!  

It is a sincere hope that fundraising will help with the mountain of costs from her hospital stays and the flights which keep her close to the Sydney Children's Hospital for treatment and emergencies. The medical gaps will be in the thousands, and the initial financial planning of one month for surgery has now proved insufficient.

I'd love for you all to follow the link to watch a movie clip, to learn and share the story, donate toward expenses and follow Beth as she bravely finishes off surgery and begins another recovery. We are hopeful that Beth's medical complications are finally met with happy news!

https://www.youtube.com/watch?v=PqiNGLAOUA8