Harry has a tumour in his spinal cord, which after two major operations to de-bulk and 12 months of chemotherapy, is still growing. As the chemotherapy hasn't worked all treatment has stopped.

On top of this, Harry has Leptomeningeal disease in his brain, which the Oncologists at Addenbrookes haven't seen before with his type of tumour. This rare disease that is very unpredictable is growing and will cause further health problems for Harry. The hope is that the Proton Therapy will stop this in its tracks.

The NHS have been amazingly supportive over the last two and a half years and have treated Harry as much as they could. However, due to the Leptomeningeal Disease in his brain, the funding for Proton Therapy has been turned down.

Due to Harry's age and the side affects/risks associated with radiotherapy we feel this is not something we can put him through so the only option is to take him abroad for Proton Therapy which we would have to fund ourselves.

We are raising funds to cover his treatment, which would take six weeks plus an initial visit for scans, the cost of accommodation, food and travel for the family etc.

UPDATE - After lots of meeting and conversations with specialists over the country-they have decided to try a different type of chemotherapy. This will be every week. Harry will have an MRI after three months To see what the tumour is doing.

Harry will need protons, but we are now not sure when, it could be three months-it could be three years.

All money raised will go to getting Harry proton treatment he needs and creating smiles along the way. If at the end of harry journey (no end in sight at the moment) any money is left-we will donate it to charities that have helped us along the way.

Thank you so much for taking the time to read. We are so gratful for every penny donated-THANK YOU 💙💙💙💙💙💙💙💙💙

Imagine it was your child, your life.......

Imagine being told your child has a large tumour in their spinal cord

Imagine being told your baby boy, who has only just turned 5-will need a 12 hour operation, an operation that could leave him paralysed or worse.

Imagine holding your baby boy while they put him to sleep, staying strong for him, but once he's asleep you break.

Imagine waiting for hours, missing your daughters 8th birthday, waiting for news he's ok.

Imagine sitting by his bed in intensive care while he's kept asleep for 36 hours with tubes coming out all over the place,

Imagine the relief when he wakes up mixed with the pain of seeing him unable to move,

Imagine being in hospital for weeks while your beautiful girls are two hours away, missing their mummy and daddy.

Imagine teaching a 5 year old to walk all over again.

Now imagine being told they didn't get enough of the tumour out so they are going to do a second operation.

Imagine holding your child, night after night while he screams in pain. Telling you ‘he can’t take it anymore.’

Imagine thinking the worst is over, only to be told the tumour has grown, and spread to his brain,

Imagine the oncologist telling you he's not seen anything like the disease your child has in his brain.

Imagine being told your beautiful boy will need 18 months of chemotherapy, loose his beautiful hair,

Imagine having to take your child to hospital so they can insert a tube straight into his heart, a tube that will be in his little body for years,

Imagine having to smile while they pump his little body full of different chemotherapy drugs.

Now Imagine being told the chemotherapy isn’t working either-the tumours are still growing.

Imagine being told he needs life saving proton therapy abroad.

Now imagine being turned down funding from the NHS and having to find £70000 to save your sons life.

Imagine asking for help to keep your son alive.

Imagine being asked over and over again ‘how is he’ ‘how are you?’ And you say he’s fine, I’m fine. When you just want to scream!!!

Imagine having to be strong when your world is falling apart, but the outside world carries on like nothing is happening.

Imagine not knowing when the nightmare your living in will end......

Some days are harder than others, some days the smile is harder to fake-but every day I know how lucky we are to still have our beautiful boy and we will fight to the end to keep him by our side