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Hello Sunshine News Readers
It’s Families Coordinator Rachel again! As June is our Families Month, I want to share with you a really wonderful story of how funding equipment can make the world of difference to a child and their family’s lives and how your donations can make dreams a reality.
I’d like to introduce you to a phenomenal young man called Bailey.
Bailey is 9 years old. Earlier this year, his Mum Claire applied to us for an innovative piece of equipment called a Baffin Chair which could literally change his life. She told us all about Bailey’s medical conditions and his complex needs - “Bailey has a very rare chromosome disorder which impacts his health greatly, resulting in low muscle tone. He is non-verbal, nil-by-mouth, tube fed, unable to walk, stand or sit unaided. He suffers with seizures, has vision and hearing impairment and profound learning disabilities. In December 2020 he was diagnosed with fibular hemimelia, which means the bones in his legs, feet and ankles have not grown in proportion to each other, causing him great pain and leaving him unable to use typical or generic equipment supplied by his therapists or the NHS.”
This is where the Baffin chair comes in. This specialist piece of equipment is unique in the support it offers children and young adults like Bailey. Mum Claire explained, “The chair is a supportive positional aid which has the ability, at the touch of a button, to change Baileys position, to gently stretch his limbs, to give him a change of position pain-free and to lift him into a standing position which is suitable for his limbs.” Unfortunately, because of it’s price, it was not available to the family via NHS loan equipment and the family turned to The Chronicle Sunshine Fund for help. Our specialist Equipment Panel met in March and decided that it was really important that Bailey has this piece of equipment for his comfort and continued therapy. They agreed that The Chronicle Sunshine Fund should fund the £6000 chair and your donations have made this happen.
I’m delighted to share with you all that the family took delivery of the new chair at the end of May; and almost immediately, Bailey and the rest of his family were blown away by this amazing, life changing piece of equipment. It’s already had a really positive impact on Bailey’s day to day life. Mum Claire shared with us - “Thanks to the Baffin Chair, Bailey has now got a completely new perspective - it’s given him the opportunity to stand for the first time in over a year, to help with his digestion, breathing and give his body a full physio workout, all whilst supporting him and ensuring he is safe and pain-free. His siblings have become very upset when they have witnessed Bailey in pain lately as he’s usually a very happy, content little boy. This chair has dramatically changed how they can play and interact with him on a daily basis. Bailey can stand alongside his siblings and access things at a height he could not have reached before, giving him a much broader view of the world, rather than from a seated position. He no longer suffers with pain in his limbs as thanks to the chair, they are fully supported and cushioned and we can change his position without physically handling him.”
But the positive impact of the chair doesn’t end there; once Bailey is able to stop shielding and return to school, his mum has said that the chair can also go with him everyday so he has a greater experience at school and can access everything that his classmates can. This will help Bailey forge new friendships and have experiences with his classmates which may not have been possible before.
We all take standing, sitting and moving about for granted and complete these movements without a second thought; but for so many children and young people like Bailey; they need these super specialist pieces of equipment for movement, safety and comfort.
It’s vitally important that we are able to keep funding these pieces of equipment and we desperately need your support to turn more dreams into reality. There are children and young adults all over our area desperately waiting for specialist equipment like the Baffin Chair. Please consider making a donation to support them today, simply visit our website for more information, www.thesunshinefund.org. You can also donate to us via cheque, see details in our header. No matter how large or small your donation, rest assured, it will go a long way to helping us support disabled children in the North East.
Rachel x