Support Chloe and her family

Chloe Shapcott was diagnosed with local osteosarcoma in the lower-left femur on the 11th of October 2021, devastating an already grieving family.

 

Chloe has Phelan-Mcdermid Syndrome, a rare genetic disorder that causes developmental issues, speech impediments and a weakened ability to feel and express pain. It's a congenital condition but can be mistaken for autism and sensory impeding disorders, which she was misdiagnosed with multiple times at a young age. However, ASD is another disorder that falls under the umbrella of Phelan-Mcdermid Syndrome.

 

Chloe's diagnosis came only ten months after the passing of her mother Linda, from issues relating to a 20-year fight with cancer. The day after Chloe's diagnosis, she went under general anaesthetic for a PET scan; 2 days later, she went under again to put an access port into her chest. Only four days after receiving her diagnosis, she started her first round of chemotherapy.

 

Midway through her 2nd cycle of chemotherapy, Chloe went back in for an MRI to check progress and plan before a surgery. On the 11th of December, the family were told her prognosis had changed from local to metastatic. It was found that the chemotherapy had not slowed down the tumour growth in her leg and had also spread to her lungs, where they found two nodules of osteosarcoma. The tumour was classed as refractory, which means it doesn't respond to treatment. Surgery was planned, and it was hoped to be a knee reconstruction or knee replacement, but an MRI confirmed that the only option now, due to the tumours aggression and resistance to chemotherapy, is for Chloe to have an upper thigh amputation of her left leg.

 

The surgery is booked in for the 25th of January, nine days after Chloe's 14th Birthday and just 3 days after the anniversary of her mother's passing. Chloe started new chemotherapy on the 28th of December, which has shown progress in treating refractory tumours that will target both the tumour in the knee and the nodules in her chest. This chemotherapy will hopefully be successful in reducing tumour sizes.

 

Chloe is an extremely strong, brave and courageous young girl who was thrown into a series of events that has and will change her life. Although Chloe's disorder makes it hard for her to understand why she is so sick, she has become accustomed to the processes around her, from the chemotherapy, the blood test requirements, the half-hour to hourly medical observations, the use of a wheelchair, the loss of her hair, and even to some extent, the excessive beeping of the chemotherapy pumps (which for a child with sensory issues is incredible).

Chloe still kicks on with her cheekiness and sarcasm, even at the lowest point of the chemotherapy cycle.

She has gone through multiple early morning and late-night ED trips for Febrile Neutrophilia.

She never used to take tablets at all and is now taking almost ten tablets a day on some days.

 

This cancer tumour may be aggressive and resistant, but Chloe's strength and resilience will beat it. She has a long road of chemotherapy and recovery ahead of her, but with her loving and supporting family around her, along with her never-ending supply of Paw Patrol plush toys, she will come out the other side, no matter how long it takes.

 

Chloe is receiving treatment at Perth Children's Hospital and is staying at Ronald McDonald house along with her Dad, Brett. Since her diagnosis, Chloe and Brett have been in Perth but reside in Kalgoorlie. Perth will become their temporary home for many months to come while Chloe recovers and rehabilitates.
 
Any donation no matter how big or small will be greatly appreciated.

All monies raised will go directly to Brett to help cover the costs of things like car and house upgrades, living away from home expenses and Chloe's rehabilitation.  These funds will also help Brett as he will become Chloe's primary carer and may not be able to return to work.

For those of you who don't know me, my name is Dave and I am fundraising for Brett, Chloe and their family.  I currently live in Perth but met Brett back in Kalgoorlie in 1994 when I first moved there through work.  We have been good mates ever since. 

A big thank you to Jonathan for writing Chloe's story for us, without him we wouldn't have known where to start.