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When the 18-year-old from Fazakerley died peacefully at home, they had hoped to give her the kind of send-off she deserved.
Instead, the country went into full lockdown just 10 days later and Holly’s family were faced with a socially-distanced, limited number funeral far from what they’d intended.
To bring some element of Holly’s trademark happiness into the day, they asked everyone to ‘Wear Pink for Hol’ and thousands of people, locally and across the country, did.
Now with restrictions still in place 12 months on from her death, they are planning to do it again, and this Saturday will be the second #wearpinkforHol day.
The Guide Liverpool will pay its own tribute to Holly by turning pink for the day on social media.
“For us facing this as a family on Saturday, it is a really sad day because it’s the day we lost our little girl but I don’t want people to feel sadness,” says mum Hayley. “I want them to smile and think about the happy memories they’ve got with Hol.
“We want them to wear something pink, listen to her favourite song which was Bruno Mars’ Just the Way You Are, and just think about how much they loved her and what she did in her life. That will help us all to get through.”
Holly, who featured on the current BBC Hospital series, had a number of life-limiting complex conditions including cerebral palsy, epilepsy, chronic lung disease, and osteoporosis.
But that didn’t stop her living what her mum describes as ‘an amazing life’, experiencing more than many young people ever do.
“I always used to say to everybody ‘please don’t feel sorry for us, she’s probably done a lot more than you imagine’,” says Hayley. “She camped, she zip-lined, she went canoeing every year, she abseiled, she went caving. She had a wonderful life with lots of opportunities.
“This past year has given me a lot of time to reflect and be able to appreciate that. What she did in those 18 years was incredible – she went to Parliament and helped to change laws for children with complex health needs, she helped bring about a change in Girl Guiding in making it more inclusive and accessible for young people with complex health needs. She influenced people who didn’t have disabilities to engage more with people who did and she changed their perception.
“We used to go into Edge Hill to volunteer with nurses before they qualified and I’ve had them contacting me since Holly died to tell me that made them look at children with complex health needs, and families, differently.
“A couple of her friends have now become nurses in Alder Hey because of that grounding they got being Holly’s friend which is fabulous.
“I see these things still happening and it’s all because of what I call Hollie’s magic. She had this ability to go into a room and instead of feeling sympathy for her, people wanted to know about her life and to speak to her. And she could engage with people without a voice, just with her eyes she could communicate everything, and they always had that bit of sparkle.
“More than that, she was just the most amazing daughter ever and I couldn’t have wished for better. There was no greater gift in my life.”
The past year without their special girl has, says Hayley, been unbelievably tough.
“Covid has paused our grief process and it’s made it completely unimaginable,” she reflects.
“We’ve got the most amazing family and friends who supported us as much as they could, but the lack of human touch, a hug, magnified the loss a million per cent.
“We needed our A-team around us and that was stripped away from us, and so many other people in a similar position to us, at a time when we needed it most. The isolation was cruel.
“A year on we’re still in this grieving limbo, between losing Holly and saying goodbye to her and celebrating her and that’s a very strange place to be.”
The first #wearpinkforHol gave Hayley, dad Gary, brother Josh and sister Ruby, so much comfort, which is one of the reasons they’ve decided to bring it back.
“We had a beautiful carriage for her, and the most amazing pink unicorn and a rainbow made out of flowers. The streets were lined with people wearing pink and people were out with speakers playing Bruno Mars as we went by. There was even a sign outside the local Sainsbury’s saying, ‘goodnight Hollie dollie’.
“It was beautiful for us to see how loved she was. Having people remember Holly softens the pain just a little bit and it helps us to get through the most difficult days.
“We were so privileged to be Holly’s parents and we loved it. Being Holly’s mum was the best thing ever and I miss that so much.
“I adore my other children to the ends of the earth, but Holly needed me in a different way than they need me. That has gone to sleep with my Hol, but doing it for 18 years was the biggest privilege I could ever have had.
“For all the incredible positives, at the end of the day I’m still her mum and my heart is broken into a million pieces without her.
“But Holly’s legacy and the magic that Hol had is still going on today and that makes me feel so proud and so thankful.”
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