Libby’s story

Two-year-old Libby Carlin, from Peterborough, lives with Bohring-Opitz syndrome, a rare genetic condition that affects the development of many parts of the body.

Libby needs 24/7 care and is unable to sit, crawl or walk. She is severely delayed, having to have someone watch her at all times to check she is safe. She also needs postural care, is being treated for seizures and is fed through a feeding tube 16-hours-a-day.

Parents Kirsty Carlin, 35, who owned a beauticians before she became Libby’s full-time carer, and Gary Carlin, 34, an electrician, received Libby’s diagnosis at Peterborough City Hospital when she was only three-months-old. Kirsty had already been researching causes and symptoms of what could be wrong with Libby’s development before this and had found the same diagnosis on a Facebook group page. She explained she knew straightaway that was what Libby had, but had prayed she was wrong.

Upon hearing the diagnosis, Kirsty said: “I felt broken, numb and like our whole world had just come crashing down. We were very scared of what was going to happen and all the unknowns.”

Kirsty and Gary were advised by their community nursing team to contact EACH, to help support Libby’s constant care. Before the COVID-19 outbreak the family would attend EACH’s hospice in Milton for hydrotherapy sessions, music groups and overnight stays. Libby’s brother, Jake, 11 and a pupil at Newborough Primary School, also enjoyed EACH’s sibling days.

Kirsty said: “Every part is so important to us, but I feel the day care and overnight stays are the most beneficial for us as a family. It took me a long time to leave Libby in the care of EACH’s amazing team, but once we got to know each other and I could see they knew Libby, and Libby was happy, I was able to relax. I had some time for me again, which took a long time to realise I needed. It also gives us time to spend time with Jake doing fun activities or just watching a film. A lot of time has been taken away from him to care for Libby and it’s nice to be able to have that one-on-one time with him. Knowing Libby is in safe hands is a weight off my mind.

“EACH has made a huge difference to our family and also the way we look at our lives now. I was so upset when we were told Libby would need hospice care and had all these sad, depressing images in my head.

“Then we went to Milton and it was so warm and welcoming. I felt happy. This was somewhere we, as a family, could make some amazing memories, meet other families and receive support.

“I’m really not sure where we would be today without EACH, from the phone calls checking in on us to the day care and fun days for Jake. They are a part of our life now.

“Even the hydrotherapy sessions play a massive part. Just seeing how Libby reacts in that 20 minutes from first getting in the water all stiff to slowly relaxing her muscles makes my heart melt.”

The Carlin family, like most others who use the charity’s services, currently do not visit the hospice as EACH helps families shield their vulnerable children from COVID-19. The hospice remains open for end-of-life care and bereavement support, as well as urgent requests for care and support, but most of EACH’s other services are now being carried out virtually.

Kirsty said: “COVID-19 has changed our lives dramatically. Shielding Libby for weeks is tiring, stressful and emotional. We’re also currently trying to build a house during this time, too, just to add to the stress.

“Obviously there’s no escape. All care and therapies are on hold for who knows how long? Not getting the occasional day care is probably affecting us most. Just needing that break makes a huge difference, but we know this is how it needs to be for a while.”

In the meantime, the family have received support from EACH in the form of phone calls from Care Assistant Anna Pinner. Kirsty said: “Anna has called us a few times and if we’ve been unable to answer she’s always left us a message. She just checks to see how we are, what’s been happening and if there’s anything she can help us with in any way. Just hearing a familiar voice makes everything seem that little bit better and lets us know we haven’t been forgotten.”

Talking specifically about the impact of the current situation on Jake, Kirsty said: “Jake has found it hard as he’s home all the time now and more exposed to Libby’s bad times, seeing her go blue, seizures and suffering in pain.”

EACH sent Jake, and all other siblings who were due to attend a siblings group gathering in April, an activity pack including instructions for a springtime sensory walk. The charity’s support of siblings and the rest of the family is now extending to resources on its website and packs being put together by Cambridge’s Fitzwilliam Museum for those unable to get online.

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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