Are very honoured to announce a Ride/Drive for Sienna, where 100% of all money raised will be going to aid Sienna in her future visits to hospital for treatment and any medical expenses that arise on her journey forward. Our ride/drive will be on the 4th of February 2023 meeting at the Spreyton Memorial/Cricket club carpark at 9.30am for a 10am departure.
We encourage as many people as possible to attend and support this wonderful cause, all we ask is for a donation of any amount to help this beautiful young lady to live a life as comfortable as possible. The ride will cater for all level of riders, but we do ask that all vehicles/bikes are registered, and operators are licence.
Sienna is 5 years old and was diagnosed with a genetic disorder at 3 weeks old called Neurofibromatosis type 1 that causes benign tumors to grow in or outside of the body. Sienna has a plexiform neurofibroma that has wrapped around her spinal cord, from C2-C5 vertebrae and in her neck down to her chest. Our family has been very fortunate to be able to have Sienna be approved for the trial for a MEK inhibitor, thanks to her teams in Neurology and Oncology. Due to the placement of the tumor, Sienna cannot sit, stand, crawl or walk. Due to Sienna’s condition, she has Global Development Delay and Sleep apnea. Sienna’s diagnosis and our journey so far, attempting to navigate the medical system and treatment options, has been a struggle. We never know what to expect or what life will hold for us, throughout all the surgeries, appointments and treatments, but despite all of this Sienna is the happiest little girl and her smile continues to light up a room. Whenever she attempts to sit up you can see the determination in her and as her parents, we find that one of her strengths is her courage. She is not one to give up, just because something is difficult. The specialists at the Royal Hobart and Royal Children’s hospitals have also informed us if Sienna’s tumor doesn’t stop growing that they will be stopping her chemotherapy.