Our incredibly strong friends received much-needed support from Acorns Children’s Hospice during the most difficult time in their lives. They’ve shared their heartbreaking story below 💔

Please help us raise funds so this vital service can continue to support other families who may need it 🩵💙

Our Acorns story began with Ben.

Ben was our eldest child, our first baby, born in a Spring with both daffodils and snow on the ground.

Ben loved many things - he loved to ride his bike, he loved marble runs, he loved George Ezra. He loved school, he loved his friends, he loved his sister. He loved books that made fart noises and he loved the swimming pool. He loved dancing, superheroes, jumping on sandcastles, fish & chips and running with his top off. He was more interested in climbing trees than football until it became something to believe in.

Just after his fifth birthday in March 2018 Ben was diagnosed with a glioblastoma; a rare aggressive brain tumour. The tumour took away his ability to walk and talk and the treatment was gruelling. During the 14 months that followed, Ben endured so much more than any child should ever have to. Incredibly, he regained his speech and mobility after 6 weeks of daily radiotherapy. He came home from treatment every day excited to watch the World Cup and by September of that year, a viral clip of him receiving a replica World Cup after his last radiotherapy treatment had caught the attention of England Captain Harry Kane and he was invited to lead the team out at the England v. Spain match at Wembley. It was at this match that Harry Kane chose to share his Golden Boot moment with Ben. We were on a high, if it had been a film they would have ended it there.

Heartbreakingly, just 2 months after this, we learned that Ben's tumour had advanced and we were referred to Acorns hospice for palliative care and support.

Despite being the most devastating and fearful time in our lives, we felt so embraced by Acorns. They were there for us at a time when there was nowhere left to turn and they cared for all of us with dignity and compassion allowing us time to just be mum and dad to our lovely boy.

After just over a year of fear, hope and everything in between, Ben died at Acorns hospice in Birmingham. He was just 6 years old.

Reuben

Reuben arrived almost a year after Ben died during lockdown 2020.

Reuben, like Ben, was a Spring baby and had the familiar blue eyes of his brother.

He had the softest hair that spiked into a defiant "cockatoo" quiff and the cutest yawn you could ever hear.

We were unaware at the time that Reuben had been born with a rare neurogenetic condition and that we would be faced with the heartbreak of knowing that he would never walk or talk and that his life too would be limited. Overnight we returned to becoming medical parents and the hospital became a home from home on many occasion.

Reuben had profound and complex needs. He had epileptic encephalopathy which meant he was on multiple medications to manage his daily seizures. We lost count of the number of times we were told to say goodbye to him but time and again he defied the odds, proving everyone wrong and gifting us with more time for cuddles.

He was a well loved member of his school community and his Acorns family. Through them, his experience of life expanded and his little wins celebrated at every stage.

Reuben was very at peace in the water so his hydrotherapy sessions at Acorns were precious times. They even supported us in having a pool party there for his birthday with his sister and cousins, something that simply would not have been practical in a community pool.

Reuben died 3 weeks after his fifth birthday on the 15th May last year, surviving his original prognosis by 3 years. He spent his last days with us at Acorns, feeling the sun on his face amongst the beautiful Spring flowers in the hospice garden. It is not enough but it is everything at the same time.

As parents we could never have imagined the direction our lives would take and that the term children's palliative care would even enter our vocabulary. We have come to recognise that there is a whole community of families of complex children who, without the support of charities like Acorns, would be lost and afraid trying to navigate the unimaginable.

Whether it was respite stays that allowed us to be there for our daughter, outreach sessions at home, stay and play sessions, sibling groups, family activity days or simply being at the end of the phone, our team were beside us every step of the way.

Acorns has truly been a lifeline to our family throughout caring for and losing our two boys. They continue to support us and our daughter in rebuilding around our great loss.