Sonny’s story

Sonny Saunders lives in Norwich with mum Kelly, 31, dad Jordan, 30, who works for Betfred, 11-year-old sister Star and eight-year-old brother Hudson, who go to Valley Primary Academy. He was diagnosed with a diffuse intrinsic pontine glioma, an aggressive and difficult-to-treat brain tumour, only a week or so after his sixth birthday in February.

Kelly recalled: “We were bowling and Sonny didn’t want to join. After bowling we went straight to the cinema, to see Sonic, and he just sat there. He didn’t want to have any sweets or snacks, or anything. Sonny’s normally quite quiet and laid back anyway, especially compared to his brother and sister, but I knew there was something wrong. We went to the doctors a few days later and that’s when all this started.”

Both Kelly’s parents died, just two years apart, when she was young, so she has always carried a feeling of loss, but she said hearing Sonny’s diagnosis was different.

“When I heard what was wrong with him… I can’t explain it. Everything sunk. My heart just went. I’m kind of used to it and know what to expect, but it’s still not the same when it’s your child. Knowing he’s just had his sixth birthday and not really had any life yet is just heart-breaking. He’s always been so sweet and loving, and would do anything for you. A few days later I had to tell my other two children. That’s just a feeling I never wanted to feel.”

The family were introduced to EACH shortly after, with visits and more recently phone calls from EACH Clinical Nurse Specialist Penny McIntosh, who has helped set up a symptom management plan.

Kelly said: “We want to try and do what we can for him until that time when we do have a little bit of a struggle, but just to have someone checking in, knowing they care and that there’s somebody there at the end of the phone if you need them makes me feel better.

“Penny’s been amazing. Sonny loves her and feels secure when she’s around or on the phone. I think it’s about the way you speak to people. In the hospital they’re lovely and they do look after you, but some of them have a different tone. Penny’s got a soft, lovely tone about her that puts Sonny at ease.”

Kelly said shielding at home during the COVID-19 pandemic had not been too difficult, though she added she felt valuable time to make memories with Sonny was being lost.

“Sonny’s been fine at home. He can’t walk or talk very well at the moment, but he’s happy and nothing phases him. Even when he was poorly and couldn’t eat for a little while, he didn’t moan. He never has done through all of this. He’s a trooper.

“EACH recently helped us get a trip to Banham Zoo and that was brilliant. We’ve been indoor for three or so months, though, so hopefully all this will go away, lots of things will reopen and we can start making all the memories we want to. It’s obviously nice staying at home sometimes when the weather’s nice and we’ve tried to do as much as we can, but it’s not the same, is it?

“We raised funds through GoFundMe to go to Disneyland Paris on 20 April. That was rebooked for 20 July. Obviously Sonny’s a bit further along now, so we’re not sure if we’ll be going. If not we’ll get a refund and try and go somewhere a bit closer to home. That was just heart-breaking when we couldn’t take him and we had to tell him. He just said ‘Don’t worry, I’ll just go to Hemsby when it’s open’. That’s how cool and chilled he is.”

As part of trying to make the most of their time at home, the family have been renovating their garden, with a hot tub secured by Norfolk charity Rebecca’s Wishes, a bar, new patio, steps and artificial grass.

Kelly keeps her mind occupied at the moment by regularly providing updates about Sonny on her blog, Sonny’s Smile.

Sonny’s family would like to visit Disneyland Paris whilst they still can, please see their Go Fund Me page for more information.

Last updated June 2020

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100). 

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