Tuesday, 28 July 2020 00:00

Become an EACH Star Maker and help provide ‘star’ nurses for vulnerable families

Written by  Michael Jarvis
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Tina Howlett, Sarah Bayliss and Charlotte Pipe Tina Howlett, Sarah Bayliss and Charlotte Pipe

A Mundesley family have described how care from East Anglia’s Children’s Hospices (EACH) “feels like a big hug when you really need it most”, as the organisation launches a fundraising campaign to provide two ‘star’ nurses.

EACH is asking supporters to do 100 star jumps a day over five days and raise at least £50, as part of Star Makers. The charity hopes its campaign will raise £64,000 in total, enough to provide two of the nurses whose help is so greatly valued by families like the Palmers.

Ellie, six, lives with sister Eva, nine, mum Laura and her mum, Ellie’s grandmother, Heather. Laura is full-time carer to her girls, who are both home-educated, and Heather helps with care, too.

Ellie has Down’s syndrome, Ollier’s disease (a very rare bone disease that occurs in one in every 100,000 people), autism and complex lung and airway issues. She is dependent on a non-invasive ventilator to help her breathing.

All that means she requires 24/7 supervision and one of Laura or Heather even sleep in her room each night to ensure her safety. The tireless monitoring makes the support of EACH massively important.

Laura said: “EACH is the club you never want to qualify for, but now we are we’re so hugely grateful for the support and what that means to us as a family.

“We’ve accessed different support from EACH, including from the Clinical Nurse Specialists of the Long Term Ventilation (LTV) team. This has been invaluable, attending hospital appointments, helping chase any issues that need resolving and understanding any concerns I have about Ellie. It’s really reassuring having that support, especially from a team that do all they can to get to know both Ellie and our family. It’s a truly holistic approach that can most definitely be lacking at times when you have a child with complex needs and lots of different professionals involved.

“Having the support network we have from EACH has really helped us as a family and improved our quality of life. The care from EACH feels like a big hug when you really need it most.

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Money raised during the Star Makers campaign will help ensure EACH can continue providing this level of support for hundreds of families right across the region. The charity, like others, has taken a considerable funding hit as a result of the COVID-19 pandemic.

Thanks to the efforts of supporters, government funding and taking full advantage of schemes available to it, EACH was able to survive an initial devastating drop in income and help support families at home by phone and online, having rapidly developed its knowledge and expertise in delivering services using virtual technology.

Laura and family have found lockdown and having to self-isolate a real challenge, like many families supported by EACH.

Laura said: “COVID has obviously impacted upon our ability to access services. We’re unable to attend The Nook for care days. We’ve been shielding since March and it’s certainly made life more difficult than usual. It’s felt like we’ve been forgotten about by many elements of our usual life, but not by EACH. We’ve had phone calls and emails checking in to see how we are, support from Charlotte the LTV nurse when I was concerned about Ellie and ongoing support from Michelle the counsellor, all of which have been greatly appreciated.”

While EACH is offering most of its services using virtual technology at the moment, it will need to get back to providing its full range of services as soon as possible. Its loss of income is going to continue for some time, including a period of recovery over the coming months and years that carries huge uncertainty, making Star Makers all the more important.

Tim Jenkins, EACH Norfolk Community Fundraiser, said: “This is a fun campaign to get involved with over the summer holidays. We’d love to see families and friends taking part together, maybe in relays, fancy dress or by dancing. Those that can’t jump can still make stars with their hands or arms. In addition, we have colour-in stars for windows and dot-to-dot activities, or star-to-star in this case. You can track your progress on our special charts and download a well-deserved certificate at the end. Don’t forget to share your star-making on social media and use the hashtag #EACHStarMakers. We’d also like to say a big thank you to Creative Sponge for supporting us in bringing this campaign together.”

For more information about the campaign and how to get involved visit www.each.org.uk/starmakers.

Last modified on Monday, 03 August 2020 21:24

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