A number of years ago Alan and I were parents surviving on little or no sleep. This wasn’t due to the demands of a newborn as you would expect but because of our severely disabled daughter and her severe epilepsy.
Every night we faced the dreaded pounding of the cot sides as our daughter whacked her arms ravaged by a seizure.
We were in desperate need of a specialist bed but the words “not funded” were becoming the norm.
Well that was until the community nurse asked us if we had heard about a charity called Newlife Foundation for disabled children.
Well we hadn’t but they soon became known to us as the ones who gave us our first night sleep in years.
So now ten years later when I was asked as a blogger if I wanted to go behind the scenes and learn more about the charity I jumped at the opportunity.
So this is me telling you about the amazing charity known as Newlife.
Since its beginning in 1991 Newlife have kept at their heart the needs of disabled children and their families.
Raising funds to support and advocate for disabled children and terminally ill children across the UK.
Newlife is rather unique its its fundraising “actually earning most of the funds needed by operating a successful recycling company which offers environmentally sound services to major retailers, manufacturers and brand holders from across the High Streets of the UK sf increasingly in Europe. All profits from this recycling company are donated to Newlife.”
My girls and I take advantage of this recycling company getting some great bargains.
Newlife are a fantastic charity and offer support and guidance with real compassion. After only spending a few hours with the staff I could see and feel the passion for what they do.
They have four key national activities.
A free national helpline which supports and informs families. Its confidential and trusted. Nothing is too important or trivial to discuss with a Newlife nurse.
A Newlife nurse can help discuss the grants needed for essential equipment and progress those which may be funded straight from Newlife funds or help provide information of grants available nationally from other sources.
The nurse service has provided families with a professional listening ear since its origins in 1993. Since 2004 the service has directly helped over 35,000 people at the number of families continue to grow.
I know I have spoken to friends who have disabled children who tell me that this service has been a lifeline for them. Even when they cannot physically help, their kindness and willingness to listen has really supported them. One friend told me that she was at rock bottom and it was a Newlife nurse that lifted her up.
Personally I think this is an incredible service and one I know is highly regarded in the disability community.
One of the biggest issues when raising a disabled child is the cost of equipment. This is a major area of a families life and can effect everyday. The constant battle to get what your child needs is something I am so aware of. The time needed for assessment through statuary services left us struggling every night for a number of years only to reach the end of the assessment to find that although they agree there is a need they do not have funding left us exhausted and in pieces.
This was when Newlife came to our rescue and to the rescue of over 7000 children nationwide.
I really want to state that the equipment I am talking about isn’t just added extras that would make our children’s life brighter. It is vital equipment that is essential to a disabled childs life.
These have included pain relieving beds, wheelchairs, communication and other aids.
Newlife grants have funded over £10 million in equipment changing the lives of disabled children and their families all over the UK.
We were one of the families that was helped right at the beginning. On my visit I found out that Olivia’s bed grant was number 147. I cannot describe in words the impact that having a bed that protected my little girl when she slept when she seizured made to us as a family. To be able to sleep without fear was such a gift to us. To able to sleep without hurting herself made such a difference to Olivia.
Newlife also offer an amazing ‘Just Can’t Wait Service’ this provides loan equipment to terminally ill children nationwide. This is an incredible service as it has allowed terminally ill children to be cared for at home rather than in hospice. As one who knows the importance of every second counts I know this loan scheme has really blessed many families.
Newlife also offer a ‘Play Therapy Pod’ scheme this is the free loan of specialist development toys for families who care for a disabled or terminally ill child. Each pod consists of a variety of specialist toys that suitable for the age and ability of the child. Some of the greatest teaching can be achieved through play, so again a fantastic service.
This was a something I was not aware that Newlife were part of so I was extremely surprised and encouraged to learn that over the years Newlife has funded over 220 research projects at over 50 leading institutions around the UK funding around 15 million in research.
Can I get a collective WOW.
Chatting to the staff from Newlife it was evident that they were really passionate about this area hoping that one day grants won’t be needed as treatment and cures for disabilities will be so advanced.
I know I too have this hope.
Let me show you some numbers
15 million invested in child health medical research
70 young doctors directly supported through investment in research training, leading to improved child care and research.
50 genes identified, through Newlife research, aiding diagnosis and treatment.
220 grants funded for pioneering research.
59 The number of leading institutions where Newlife has funded medical research.
How amazing are Newlife !!
Raising a disabled child is hard work there is no way to hide from that but at times what makes it worse is the constant battles we face just to get the help that we need. Newlife listen to parents and carers and take these messages, these struggles to the policy makers through their campaigns and awareness activities. They have become the voice of the families on important issues and they have helped to overcome the isolation many face.
As a leading charity Newlife are often consulted by Government on major issues around healthcare, services and policy. They also liase with local authorities and local health care providers to ensure policies regarding provision are fair and reasonable. The excellent relationships they have with these professional bodies allow them to raise awareness about the needs of children and their families.
Seriously I attended my visit to Newlife believing I knew most of what they did as a charity but honestly I hadn’t a clue. The work and the people they support is simply marvellous.
On my visit to their superstore the staff at Newlife asked me for two things.
Firstly and in their words ‘most importantly’ they wanted me to raise awareness of what services they offer. They honestly wanted more families to be informed about how they can help them.
Secondly like every charity they need our help. They need people to come forward and support the charity and help change the lives of disabled children and their families.
Newlife receive no government funding so every equipment grant, every research grant and every policy change has been funded by their supporters. So obviously the more support they get the more difference they can make in the lives of children and their families.
They have a great number of ways you can support them.
Run a marathon
Hold a cake party
Host one of Newlife’s Sparkle parties
Be part of Newlife’s annual Santa Dash
Leave a legacy gift.
Visit the Newlife’s Facebook page for more ideas on how to get involved.
There are seriously so many ways you could get involved. Get your workplace on board, your school.
Every penny raised makes a difference, I know this personally. Newlife gave our family peace of mind. We could finally get some sleep knowing that Olivia was safe from harm. I cannot stress how much that meant to us.
Newlife is an incredible charity and although this is a rather a long post I haven’t touched on all they have to offer.
Over the next few weeks I will be continuing with a series of blog post regarding Newlife. I want to share some of the fun ways that you can support them.
So stay tuned there is more to come.
Lastly I want to leave you with a short video that really shows how much Newlife changed our lives.