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Libby’s story: Our hospice is a massive part of our lives

A young girl in a yellow jumper is pictured on a sofa with her brother, a young boy in a blue shirt.
Libby and her brother Jake are both supported by EACH

On Friday 22 September, a team of tenacious trekkers set off on an epic fundraising event. Their challenge? A 100-mile walk across Norfolk and Suffolk to raise vital funds for children’s hospices like East Anglia Children’s Hospices (EACH) and families like Libby’s.

Five-year-old Libby, 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.

The diagnosis

Parents Kirsty and Gary received Libby’s diagnosis 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.”


Libby with her brother Jake

Meeting EACH for the first time

Kirsty and Gary were advised by their community nursing team to contact EACH, to help support Libby’s constant care.

The family has visited EACH’s hospice in Milton for hydrotherapy sessions, music groups and overnight stays. Libby’s brother, Jake, 13 also enjoys EACH’s sibling days.

“Every part is so important to us, but I feel the daycare 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 could relax. I had some time for myself again, which took a long time to realise I needed.

“It also gives us time to spend 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.”

Both Libby and her brother Jake receive support from EACH

A warm and welcoming place for the whole family

“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.

Kirsty, Libby's mum

“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.”

You can support families like Libby’s too

The Magnificent Seven, made up of Hobbycraft’s leadership team and our very own Chief Executive Andy Fletcher, are taking on the Angles Way through Norfolk and Suffolk, walking through the vast area EACH covers.  They’ll be supported by Hobbycraft teams across the country, who will be taking on their own challenges in-store.

The team is hoping to raise a huge £50,000 to support the UK’s 54 children’s hospices, lifelines to so many families of seriously ill children across the country. You can help them by donating to their JustGiving page today – every penny really will make a huge difference to families like Libby’s.

Family stories