Hiking for a Cure: 12km for Adelaide’s Battle with MCTO
Donation protected
Hi everyone, we are the Tuimalealiifanos and we live in beautiful Townsville, Queensland.
Our daughter Adelaide has an ultra rare genetic disease called Multicentric Carpotarsal Osteolysis (MCTO). Less than 60 people in the entire world have been diagnosed with this disease. It practically means she has more cells in her body that break down bone than cells that can create bone.
It’s a progressive bone loss disease that often causes bones to disappear or simply not form in hands, feet, wrists, upper arms, and can often spread to larger bones. It causes inflammation, significant joint pain, and in 70% of cases leads to kidney disease. There is currently no cure.
We are currently training to hike a 12km track at the Magnetic Island Great Island Trek in June, with Adelaide being pulled in the Huckleberry accessible hiking cart. While training, we are hoping to spread awareness of MCTO and raise funds to progress research for a cure! We are partnering with Sophie’s Neighborhood who is working with doctors and researchers around the world, doing ground-breaking research to slow the rate of progression of MCTO.
For this fundraiser:
$600 AUD + shipping will go towards this accessory gear pack we need for Adelaide to be comfortable and for us to be successful on the hike:
A portion of donations will go towards making adventures more accessible for Adelaide, and
the rest will be donated directly to Sophie’s Neighborhood for MCTO research:
Adelaide is a joyful, sassy, goofy, determined, and BRAVE five year old that has an undeniable spark. She manages to bring tears and smiles to people all over the world and is a true inspiration. Adelaide’s Neighborhood was created to share our story, Adelaide’s experiences, bring awareness to MCTO, and spread some positivity
Follow along our journey as a family navigating a rare disease while having some fun along the way
Instagram:
Organizer
Amanda Tuimalealiifano
Organizer
Pallarenda, QLD