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Our Journey

   My name is Samantha and I am from Cornwall, UK. I am a busy Mum; juggling a home, a family and a job, until one day when my world come crashing down. It has opened my eyes to how vulnerable we all are to being physically or emotionally hurt from life-changing circumstances beyond our control.

   My youngest son, Jack, was suffering from weight loss, headaches, nausea, double vision and dizziness. Our world came crashing down when he was diagnosed with a rare brain tumour: Diffuse Intrinsic Pontine Glioma (DIPG), which is an incurable brain tumour located in the brain stem.  After doctors examined Jack and reviewed his MRI, we received the worst news of our lives.  The tumour was inoperable and the average life span for a child with DiIPG, after diagnosis, is 3 to 18 months. We were told that Jack needed 6 weeks of radiotherapy and chemotherapy to shrink the tumour and buy some extra time.  Jack fought his battle bravely for 11 months. In that time, Jack's father and I never gave up hope. 

​   Jack was such a gorgeous little boy.  He was full of kindness, fun, and laughter, he brought so much happiness to so many. He loved his family and friends. He was very bright and he excelled in maths. He was very popular with his classmates. He also enjoyed swimming and football. From the age of 4, Jack had been learning Martial Arts.  

    Before Jack became ill, he was working hard towards his black belt in Martial Arts. During his treatment, Jack was awarded his Black Belt at the British Open Championships. Afterwards, he just burst into tears and said it was the happiest day of his life. We felt so proud of our little boy.

His treatment continued with weekly hospital appointments and cycles of high doses of chemotherapy. This weakened his immunity and made him feel very tired; he had several chest and ear infections during that time.

   Five months later, Jacks symptoms of headaches, double vision and nausea returned. An MRI scan revealed that the tumour had grown much bigger. This is when we were told the terrible news that there was no more treatment.  Over the next few weeks Jack became progressively worse; he lost his balance and could no longer walk. He could no longer play football or do martial arts, the things he loved most. He knew he was different from his friends but never complained.  Jack lost his speech and even though communicating became very frustrating for him during his illness and right up to the end of his life, he kept his cheeky sense of humour and was very brave and strong throughout. He never complained or got upset and his stamina amazed everyone who met him. 

​   We stayed at Little Bridge Childrens Hospice South-West for a short  break and Jack liked it so much that we returned again. During this stay he became very weak.  He lost the ability to swallow; he was having difficulty breathing and was in a lot of pain.  He was treated with oxygen and diamorphine. 

All I could do was hold him tight, tell him I loved him, cuddle him and hold on to his little hand.  Dear little Jack passed away in my arms with his Dad, Peter and two brothers, Daniel and Darren by our side. Losing Jack was the saddest, most frightening time and worst experience of our lives.

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