Mark was born with an extremely rare bone disorder called Maffucci Syndrome that caused Mark to develop benign growths of cartilage, bone deformities, and tangling of the blood vessels medically known as hemangiomas. The Maffucci syndrome has meant that Mark has endured many fractures, and many surgeries to correct deformities due to having soft bones during Mark’s younger years. Little did Mark or his family know that patients with Maffucci disorder are at very high risk of these lesions transforming into malignant lesions.
Whilst working through his medical hurdles Mark made it through high school and had the opportunity to do a course in Horticulture and find a true passion in the area. Then just as Mark turned 18, and thought life was returning to normal he came home one day with blurred vision and after a visit to the hospital tests showed several tumours in his brain. Surgery to attempt to resect these tumours was unsuccessful. After that unfortunate bump in Mark’s life, he did what he knows best and carried on with what life had thrown him and finished his Horticulture Diploma.
Mark then met his partner Sarah and several years later had a beautiful baby boy they named Seth. Eighteen months after Seth was born Mark was at work and a sudden bought of illness overcame Mark. Mark then went to the hospital and it was uncovered he had had a stroke. His neurosurgeon told Mark and his family he “didn’t know if he would make it through the night”. But against all odds he did!! After the stroke, a long time was spent in rehabilitation where Mark learnt how to be his independent self again.
Image: Mark and his son Seth.
Then a few years later Mark started getting pain in his thigh and unfortunately, the doctor didn’t scan where the pain was identified instead giving Mark a referral to the Physiotherapist. Over time Mark was unable to walk and after an investigation by the medical team, they found a Chondrosarcoma tumour had spread to his femur and lungs. The tumour on Mark’s femur was so huge that the orthopaedic oncologist felt amputation was the only option for treatment. This period was extremely hard for Mark and his family as they were dealing with a recent cancer diagnosis, and also facing the prospect of his leg being amputated.
Through all of these hurdles Mark has endured he has soldiered on like the champ he is. Chondrosarcoma is a nasty cancer with limited help available. It is a rare cancer and due to its rarity, there is little research being done. All the chemo’s available are trial and error. He has tried 6 months of one chemo combo and has just finished a 6-month cycle of another. Once this runs out we are in need of another treatment option that is available but expensive.
Mark is asking for assistance as he wishes to receive treatment and see his beautiful family grow older. Once this runs out we are in need of another treatment, sirolomous is a possible option but it is extremely expensive