GO PINK FOR PRINCESS P
OUR OCTOBER BUNDLE SUPPORTS A FUNDRAISER THAT IS VERY CLOSE TO OUR HEARTS, HELPING TO PROVIDE THE TREATMENT AND CARE THAT PRINCESS P REQUIRES
PENELOPE’S MUM, KATIE BURTON TELLS THE STORY BELOW:
I want to tell you all about our Penelope Booth. I’m sure all parents will describe their children in a similar, special way, but here I go…
She really was our perfect princess P, always happy and cheeky, her sass shone out and she melted the hearts of everyone she met. She was born in Bolton hospital on New Year’s Eve 2019 – born to stand out in the crowd.
This year, on Monday 19th July, our world turned upside down. During the summer “heatwave” we had a paddling pool in our garden which we’d been enjoying over the weekend. It was still hot on the Monday and our patio doors were open as we’d been out in the garden, although not in the pool.
We were all inside and together in one room of the house when George, Penelope’s older brother, left the room to watch TV and Penelope followed him shortly after – we thought she had just joined him. After a couple of minutes we got up and followed them.The paddling pool was directly in my eye line as I entered the back room and I could see something floating in the water. I got closer and realised it was Penelope. It was the most horrendous realisation of my life.
I started CPR straight away while Grant called the ambulance. I urge everyone to do a CPR course as I’ve been told Penelope wouldn’t be here if it hadn’t been started so quickly. We were transferred to Manchester Children’s Hospital who have been truly amazing and we have been here ever since.
We have been lucky enough to stay at the hospital in “Ronald McDonald’s house”, as close as we could be over the last two months. It is an independent charity funded by the public, providing families with a ‘home away from home’ during the most difficult times.
Penelope was intubated and placed in a coma in the intensive care unit and, after just one week, she was well enough to be transferred to the neurological ward where she’s being treated for an acquired brain injury – an MRI scan confirmed severe brain damage.
Although we have seen progress, I think outsiders would struggle to spot much. She’s unable to sit, speak, eat and the doctors can’t tell me that she ever will in the future.
We’ve been able to bring Penelope home for the past two weekends. I can’t tell you how lovely this has been – to be back as a family with George, in our own comforts – but it’s scary to think we are getting ready to leave the hospital that has been our safety bubble.
We’ve been in hospital for 9 weeks now and I’ve spent every day desperately searching for the best ways to help Penelope. The NHS is fantastic and we’ve been blown away by the treatment we have received, but there’s only so far they are able to stretch. This is totally understandable but as parents we need to try whatever we can.
Grant and I are expecting a baby in 5 weeks time which could be seen as terrible timing, but there is a clinical trial in America which uses stem cells found in the umbilical cord to help regenerate damaged cells – in my mind it feels like this is meant to be, but it’s expensive, at least £10,000, plus the costs of getting the cells and storing them, and also getting there with Penelope. There is a waiting list but the doctors agree that Penelope meets the criteria. We’ve been told the waiting list could be up to 2 years but, as long as we have the cells stored, we are in a better position in the future. Time really is of the essence for our family.
There are so many therapies and rehabilitation centres to look at, and no-one has a clear answer about what works and what doesn’t. We do know that the brain is able to rewire new pathways, which is what we’re clinging onto. Also, with Penelope being so young, her brain is still developing, so we’re praying this will work to our advantage.
We feel so lucky and are so thankful that Penelope is still here and it really does make you appreciate the little things. Never in a million years did we imagine that we’d be in this position. It’s been truly heartbreaking and just shows you how fragile life is.
We want to thank everyone who is supporting us through this. It’s provided us with so much comfort just knowing that we’re in people’s thoughts and they’re gunning for P to get better. P has been such a fighter throughout all this. She didn’t need to get this far but she has done and I truly believe it’s down to her strong will. She will keep going.
There are so many stories about children in Penelope’s position going on to do amazingly, we’re just desperate for P to be one of them. We’ve been told that Penelope will never be the same and we’ve accepted that. We just want her to be happy and to be to live life to the best of her ability.