This Mother’s Day will be unlike any we have ever experienced. For the mums of life-limited children in the area, it must be an incredibly scary time.
The Pepper Foundation is hoping to raise as much funds as we can to ensure Mums (and the rest of the family) still have access to the children’s nursing team during this uncertain and frightening period.
By donating what you can today, you can help to ensure Mums of life-limited children are still getting advice, respite and (hopefully) routine visits from the children’s Hospice at Home nursing team.
We hope this Mother’s Day can still be a joyful, happy experience with lots of wonderful memories made at home. Please donate today to help this happen.
Hilary’s story
Hilary tells the Pepper Foundation just how important the children’s Hospice at Home nursing service is to her and her 17 year old daugther, Libby:
Hello, my name is Hilary. My daughter and I have been immensely lucky to have benefited from the nursing services the Pepper Foundation funds for over two years. As a single parent, the nurses really are so important to our family. Here is our story:
In May 2016, my daughter Libby – a very sporty and high achieving 14 year old – came home from school very disgruntled, complaining that she struggled with the long jump in her P.E. lesson. She said that she ‘just couldn’t jump’.
Over the following couple of weeks, I noticed her becoming unbalanced while walking with the dogs and more clumsy when holding things. I thought it was worth getting professional advice.
“Libby went through every test available… but we still have no answers.”
Unexpectedly, our GP sent us immediately to Stoke Mandeville hospital where we then stayed for about two weeks for tests and monitoring. Her symptoms were progressing very quickly and she was then referred to The John Radcliffe where we spent most of that Summer. It was a very worrying time as her Mum.
During her extensive stay in hospital, Libby underwent almost every test available, including 11 lumbar punctures. It became clear by the end of the summer that her condition was not only affecting her physically, but was also affecting her brain – resulting in short term memory loss and data-processing issues. She was unable to learn new things and it was clear that she would be unable to take any GCSEs.
She has been seen by Great Ormond Street Hospital specialists, several neurologists, A neuropsychologist, physiotherapists, geneticists, immunologists and is part of the 100,000 genomes project… but sadly, to date, we have no diagnosis. Her condition continues to deteriorate – albeit at a slower rate than before – but we are told it is progressive and likely to be life limiting.
Libby is now 17 and unable to walk or write. She has to drink from a lidded cup and is not able to partake in the normal things a teenager would. She has lost a lot of her friends, and cannot be left alone for long periods of time. I am now her full-time carer.
However, she is a very determined young lady and has overcome many challenges.
“The nursing service is invaluable to me”
We were referred to the nursing team that The Pepper Foundation funds two years ago, and I can honestly say that it has made a massive and almost immeasurable difference to our lives. I have been able to discuss openly and frankly with the nurses about the future in terms of the likely progression of Libby’s condition and how we will care for her going forward.
I’ve had advice about how to explain the possible future outcome to Libby and how to deal with her emotional wellbeing, her sense of vulnerability and her fears. This service is invaluable to me.
The nursing team has supported me by attending all of the very daunting meetings I have had with schools and colleges and contributed to her Education and Health Care Plan to ensure that the support Libby receives from school or college is sufficient and appropriate.
Nurses have sat with Libby, enabling me to get much needed respite outside the house. We were introduced to several nurses so that we could find one that Libby would respond favourably to spend time with. Healthcare Assistant Katie and Libby are now firm friends and go out once a week for a few hours.
Libby (L) and Katie making Valentine’s Cards earlier this year.
Sometimes, it’s just to go shopping or get a coffee somewhere. But lately, they have also been going to the gym, attending accessible yoga classes and circuit training at Stoke Mandeville Stadium. They also tried out wheelchair basketball!
Libby has struggled to come to terms with her limitations, and having to use a wheelchair. This time outside the house with someone she trusts and likes is so important for Libby and me.
We have also enjoyed days out organised by the Foundation where we can meet other children and parents in a similar situation to ours – an opportunity to feel less isolated and alone.
Thank you.
It is hard to put into words just how grateful I am – we are – to this amazing charity and to explain its value to families like ours. Without supporters like you, children and their families would struggle.
We have no idea what the future for us will look like, but I am confident that we shall be supported, cared for and guided by the Pepper Foundation and the nurses they fund in a professional, sensitive and caring way.
Thank you for reading and for your support to a unique and outstanding charity.
Donate what you can today:
