Case Study – Samuel & James
You can help us raise £2,000 to fund the children’s Hospice at Home nursing service over the festive season. Please take a look at our campaign below and donate what you can today. Thank you.
Read Samuel’s story
I’m Rachel, mum to two beautiful boys James (5) and Samuel (3). We live with dad Paul in a peaceful Hertfordshire village.
Two years ago, our lives were irreversibly changed when we found out both our boys have a rare genetic condition. Thankfully, The Pepper Foundation help to fund a local children’s Hospice at Home nursing service, and this has been a lifeline for our family.
It started in October 2017, when James was three and Samuel was just a baby. It was a typical hectic morning trying to get the kids ready for nursery. But when James kept falling back asleep and wasn’t responding, I knew something wasn’t right.
And just like that, our lives were never the same again.
After months in and out of hospital, we were told James has a rare genetic condition called XLP1 passed on from females to males. It was discovered I was the carrier, so they tested Samuel too. He was diagnosed with the same condition at just 20 months old.
Following a serious bone marrow transplant, Samuel has developed normally for a three-year-old. Unfortunately, his brother wasn’t so lucky.
James also had a transplant, but it was too late. His brain damage was too severe to repair, so he now needs constant care and attention, 24 hours a day.
We were finally discharged from hospital in January 2019, shell-shocked from everything that happened to us. It’s hard to put into words how tough it was.
This is when the local children’s Hospice at Home nursing team that The Pepper Foundation help to fund entered our lives. Soon after our initial assessment, two nurses from the team started visiting regularly – and things changed for our family right away.
The children’s nursing service has been our safety blanket.
Our nurses, Terry and Leanne, help us in so many ways. They provide specialist clinical care to the boys, offer a listening ear and give practical help to me and to Paul. Their regular visits mean that I can get breakfast, have a shower, get dressed – things I took for granted before looking after two sick children.
James is now tube-fed, which he tries to pull out all the time. He can walk again, but it means he needs someone with him constantly to keep him safe. Samuel is a typical toddler and, as all parents know, that is a full-time job in itself.
So when the nurses come to help, I can give Samuel my full attention or do some jobs around the house knowing that James was well looked after. They are just life-savers.
This nursing service is free of charge for our family, and there is always a nurse on-call 24/7 if we have any concerns. After two years in and out of hospital, receiving this level of care at home has made the biggest difference to our lives.
And with this support, we hope to spend our first Christmas all together in our own home.
I can’t tell you how difficult the last two years have been for our whole family. And because of their conditions, our sons have never had a Christmas at home with Mummy and Daddy.
You can imagine how heart-breaking it was to know that being together is Samuel’s only wish this Christmas. Thanks to the funds raised by The Pepper Foundation, Samuel’s Christmas wish might just come true.
Samuel is so excited for Christmas Day he has been singing Jingle Bells since October! With James, we don’t know how much he understands of Christmas anymore, but we are hopeful he will enjoy all the lights and decorations.
Thank you, and from my family to yours…
The Pepper Foundation is a very small local charity, so your £10 donation really does make the biggest difference. Thank you.