On Monday, Noah’s Ark Children’s Hospice celebrated with charity Lifelites who has donated packages of assistive technology for the children with life-limiting and life-threatening conditions who are supported by Noah’s Ark.
The Lifelites technology gives children opportunities that they might not otherwise have to play, be creative, control something for themselves and communicate for as long as it is possible.
Simone Enefer-Doy, Chief Executive of Lifelites said:
“It’s been a privilege to see this project develop and we can’t wait to see what the future holds. We are delighted to be able to provide such a wonderful package of magical technology for the children and young people using the Hospice-at-Home services provided by Noah’s Ark – and we hope to provide more when The Ark hospice opens next spring.
This technology will help them escape the confines of their conditions to do things they never dreamed of, for as long as it is possible. Of course, we couldn’t have provided this package if it wasn’t for the generosity of our donors, so for this we are incredibly grateful.”
Liz, mother of nine-year-old Jess, who has been supported by Noah’s Ark Children’s Hospice for five years, explained the impact of these technologies:
“Jess has Rett Syndrome. She is very medically complex and has lots of hospital admissions. Part of Rett Syndrome means that she is non-verbal, and the only part of her body she can control accurately is her eyes. However, she understands EVERYTHING. Imagine just how frustrating that must be – to understand everything going on around you but having no way to communicate anything back.
About three years ago, Jess (pictured right with Lifelites patron, Sarah Ezekiel) received an ‘Eyegaze’ computer, she can control the cursor with her eyes and uses this to communicate. This has made a HUGE difference to her quality of life. She can tell us what she wants, what she likes, when she’s in pain and what she wants to do. She has told us that one of her medications was causing her horrible side effects, so it was changed. She plays with her friends at school and her sister at home, and they can argue about what DVD to watch! She can control the Amazon Alexa speaker and put her favourite music on. She chooses her own clothes when out shopping.
The Eyegaze device is the one single thing that we can do for Jess which will make the biggest difference to her life both now and in the future. The funding of such devices is essential for children like Jess, and makes such a positive impact on their quality of life.”
Karen, mother of 11-year-old Nix, who has been supported by Noah’s Ark for seven years, said:
“This kind of technology is so important for children like Nix (pictured right with mum Karen). She has cerebral palsy and uses a switch to communicate or to access toys and the computer, and her iPad is almost always on, playing her music or stories to keep her settled and happy. It works to calm her when almost nothing else does, and the distraction of it very often means she needs less painkillers too. Some of her friends are able to use Eyegaze equipment too (Nix is blind so can’t) and wow, it’s just amazing. The items Lifelites have given Noah’s Ark will I’m sure make a huge difference to the children using it.”
Lifelites donates and maintains packages of assistive technology for the 10,000 life-limited and disabled children using every children’s hospice service across the British Isles.
Dr Rachel Black, Director of Care at Noah’s Ark Children’s Hospice, said:
“Lifelites and their donors have been, and continue to be, incredibly supportive of the work at Noah’s Ark Children’s Hospice. The equipment they have provided previously has made a fantastic difference to our day to day interactions with babies, children, young people and families within the community. For individuals and groups, this technology provides greater scope for improved communication, personal expression, and fun. We are thrilled that this new package of technology will help our hospice at home team to broaden the way that babies, children and young people experience and influence their worlds, enabling them to live life to the fullest and create precious moments for themselves and their families.”
Click to enlarge photo:
Follow Lifelites on Twitter:
We were lucky enough to witness this very special moment at @NoahsArkHospice yesterday. Our patron @sarahezekiel met Jess, who uses Eyegaze to communicate like Sarah. They were able to have a conversation, proving the incredible impact it can have for those with disabilities pic.twitter.com/PdMQdEpwcL
— Lifelites (@LifelitesOrg) November 6, 2018
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