Who we are
Strongbones Children’s Charitable Trust is a national registered charity set up to provide financial, emotional and practical support, increase inclusion by providing disability equipment and educational opportunities including workshops and facilities. We also provide support for parents and carers, access to sports and activities and family interaction days for the benefit of children and young people under the age of 21 who have complex needs coupled with a diagnosis of a bone condition such as scoliosis, bone cancer or spina bifida. We support children in England, Wales and Scotland.
The charity has now been registered for over 20 years, which gives us over two decades of experience in our field. This experience has allowed us to assist children and their families with guidance on how to make their conditions more manageable and enhance their quality of life to an optimum level.
Our aim is to encourage children and young people with lifelong medical conditions to grow and thrive by supporting them, their families and carers by allowing each young person to gain experience as individuals enriching their lives through, inclusion, stimulation, inspiration and education.
We believe that by working with and supporting families we can increase aspirations and widen understanding to ensure our young people live more fulfilled lives.
Due to increasing costs and the cost of living crisis, we support families by providing them with food vouchers and home fuel payments. To some families this is a lifeline to keeping their severely complex children warm at such worrying times.
We take children out of social isolation and give them the ability to participate in everyday life and help support families whilst they come to the realisation that their child has a long-term incurable disability that will have a life changing impact on the whole family.
The majority of the children we encounter come from the most socially isolated sections of society, this coupled with the fact that many of their parents have had to give up employment to provide essential round the clock care for the life altering conditions of their children. Many people will not appreciate how much strength and resilience is needed to care for a disabled child, we feel society overlooks these parents, siblings and carers leaving them and their children feeling isolated by the outside world.
What we do
Below is an extensive list of the work Strongbones carries out, but the trustees are always open-minded to innovative projects exclusive to children under our criteria
- We provide an online support network to over 1,000 families.
- We can provide essential white goods when needed.
- We provide specialist all-terrain buggies, adapted trikes and sporting wheelchairs.
- We provide supportive seating (If refused by statutory funding at panel).
- We provide advice to families in accessing welfare benefits. This includes disability benefits and disabled facilities grants that they may be entitled to receive.
- We have a panel of Parent Ambassadors that specialise in different areas including a Hospital Occupational Therapist.
- We provide disability aids and portable hoists to enable children to have a enhanced quality of life.
- We organise family days to enable parents and children to network.
- Educational resource packs and equipment.
- Sensory equipment.
- Acheeva learning stations.
- We provide balloons to children in hospital.
- We organise accessible inclusive activity weekends.
- We provide portable smart home technology.
- We have a fully adapted and accessible caravan at Shorefield Country Park, New Forest that can provide families with much needed respite opportunities.
“Strongbones have made such an amazing impact on our life. Lewis has a terminal disease which took a perfectly normal 2 year old and took everything away from him within six months. This meant our lives changed forever and the incredible support we have received over the years from the incredible Strongbones charity has really made an unimaginable difference. We felt that we would never be able to enjoy normal, fun, family activities and that we would be pretty much trapped at home in our home version of intensive care.
With Strongbones, we have been to and seen the most amazing spectacles – mechanical elephants, circus acts, mirror and disco ball people, so many wonderful and incredible things and amongst the most wonderful, kind, sensitive, brimming with positivity people ever. On top of that, we have had equipment that has given us a life instead of an existence.
The Acheeva bed received from Strongbones has enabled us to get a very poorly Lewis, who would have been bedbound, outside in the garden to enjoy fresh air and time with family and friends, especially during the covid pandemic. It has allowed us to go further afield and visit places we could not have travelled to as Lewis cannot cope with longer than an hour or two in his wheelchair without severe and debilitating pain. We nicknamed it Bumble because its bright yellow and like Bumble Bee from the movies it transformed our lives.
The mobile hoist enabled us to take Lewis much further afield and stay over in a hotel so we could attend a very special event and will help us again when we travel to Stratford later this year for the BDFA family conference – something we could not have considered attending without the equipment Strongbones has gifted to us. Our incredible experience this year for the Queen’s Platinum Jubilee was made possible by the incredible Jubilee Garden party pack we received – the teepee tent is now a permanent garden fixture, and we love having toasted marshmallows on the biolite BBQ. Our home is filled with sensory lights and beautiful musical instruments from the Strongbones charity, and they continue to bring joy pretty much every day.
Strongbones is truly a charity in a million and the difference they make to so many lives, along with the connections they make between families who otherwise are isolated and alone – well it’s priceless.”