Myofibreblastoma – Jed’s Story


Jed was just like any other 8 year old boy, he played soccer for his local club which he loved. He also loved skateboarding and skated everywhere he could!

In  Feb 2011, Jed had been complaining of stomach aches and one night after soccer training he came off feeling unwell again. we took him to our local hospital. They sent us to the Women’s and Children’s Hospital immediately. After many tests Jed was diagnosed with a really rare tumour in his stomach (Myofibreblastoma) He was eight and the tumour was the size of soft ball!!

He was operated on and it was removed which was all very successful. Jed returned to school and back to soccer and thought wed put this behind us.

However six months later in August 2011 Jed was feeling a bit sick after soccer training. He went to bed, where he stayed all the next day, we thought he had Gastro. He was really not well by the evening and was carried in our arms into A and E at our local hospital. He was now in cardiac arrest and his body shutting down. The defibrillator was quickly used to bring him back along with an amazing doctor. Some scar tissue from his previous operation had formed a legion around his intestines and had severed the blood supply causing his body to turn septic. Jed was gravely ill.

He was taken to the Women’s and Childrens where he underwent emergency surgery. He was in theatre for 5 hours. He went a couple of times in theatre but they brought him back and he fought hard to stay alive. They had to remove 90% of his lower intestines. a week in intensive care and the next 6 months living in hospital!! He would now need to spend the next year and a half being fed through a Picc line at home until what was left of his bowel could adapt and learn to absorb food. He wasn’t allowed to swim or go near the beach, he no longer had the energy to play soccer and ride his beloved skateboards.

If this wasn’t enough to deal with the doctors had found 9 more tumours growing inside his stomach. They had grown back and multiplied. After extensive research they put Jed on a years course of chemotherapy to try to shrink them. The treatment stopped them growing.

At christmas 2014 last year he finished his treatment and seemed to be going well. He had just started training again with his soccer team when disaster struck! After six months two new tumours appeared. He has recently undergone major surgery again and is back on Chemotherapy for the foreseeable future.

Throughout his terrible ordeal he has always remained positive strong and extremely brave! His good sense of humour helps too! He has done so many wonderful things donated by children’s charities like going on holiday to the Gold Coast, meeting and skating with Tony Hawk and so much more!!

He has had his childhood taken away from him and we so very nearly lost him. He still has a very long way to go as there is no known cure for this disease. He seems to take it all in his stride – one step at a time!