Evie's Treatment Fees

Evie is our daughter, a beautiful, kind, and caring little girl who has a heart as big as anyone. She is a fighter and is so special to us.

In June last year, Evie mentioned that her eyesight was blurry. She’d been suffering with headaches so we thought she might just need glasses, so my wife and I booked her an eye test. Evie could barely read anything, just the top three letters, we were taken aback. The optician had some serious concerns and referred us to A&E. There they ran further tests and said they couldn't see anything obvious but referred us to the ophthalmology department at Pinderfields Hospital to make sure the month after.

We had a holiday booked to the Lakes a fortnight later and this is when other changes became apparent. Evie seemed to be off her food, saying it made her feel nauseous and she was extremely lethargic. She complained that her eyesight had worsened and had almost gone in her right eye by this point. We felt like there was something seriously wrong with her, something felt very wrong.

When we went to Pinderfields and saw the consultant we told her about all of Evie's other symptoms, which led her to request an MRI scan. On the day of the MRI, Sue and I waited outside the room for what felt like a lifetime.  When Evie eventually came out, we were taken downstairs to a private room. The consultant told us that they’d found a tumour which was stopping the fluid draining in her brain.

My wife broke down and I felt numb, just couldn't believe it, didn't seem real. Evie didn’t cry when she was told the news. She was glad that they knew what was wrong and that she had a chance of getting better.

She was left in the room with the nurses and we were shown the scan. Our hearts broke. All I could see was this large mass which looked like it was in the middle of her brain. We were sent to a different hospital that same day for Evie to be operated on the very next day. We were warned by her surgeon that he might not be able to restore her vision and that surgery could cause her to go blind. We were left with no choice though. It had to be done.

Just a few hours later she awoke, Evie told us she could see the sign on the opposite wall to her bed. Her vision seemed improved and a few hours later, she was reading a book for the first time in months!

They had ran a biopsy on the lump and the results came back and we were informed it was a craniopharyngioma tumor. They were unable to remove it as it would cause too much damage, but instead had placed a drain in her head to remove the excess fluid as these tumours grow cysts. We were informed this would only be temporary and with time, the cyst could well grow again.  

The cyst was large and was right next to her pituitary gland and optic nerve pushing down on both. Relieving the pressure brought her sight back and relieved the other symptoms she’d been suffering with. Evie returned to school part time, her headaches had abated and she was approaching something like the old Evie, dancing and playing with friends like any other 8 year old.

Recently Evie had complained to us that her headaches had started back up again, she was getting them daily and with increased severity. She even had to spend the entire last week in Aug in bed having been prescribed morphine to cope with her pain. We were in bits, it's just so tough watching her being stricken down with this. Her oncologist scheduled an MRI scan, and it showed that a new cyst had developed that if left unchecked would risk her vision permanently. It couldn't be drained in the same way as before so they referred her for Proton Beam Therapy (PBT) to be carried out at the Rutherford Cancer Centre. Treatment will be ongoing over 18 months with the need for lifelong drugs beyond that. This is where we are at the moment, we just need some help. There is a chance, a good chance that this would be a permanent solution of reducing the growth so we want to move heaven and earth and make it happen.

The costs associated with this are substantial, and whilst our savings cover a portion they will fall short of the costs required for the specialist treatment Evie deserves. We need to raise funds so we can continue to treat our baby and give her the very best chance of life. We’re asking the community to reach out and please help in any way they possibly can. Please donate whatever you can, every little helps. Your donation will mean the world to us and gives Evie a fighting chance to have a life.  

Thanks you

Evie, Sue and Karl.

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Organizer

Karl Gothard 
Organizer
Streethouse, Yorkshire and the Humber, United Kingdom
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