Whole new world
Life changed for Finley when he took possession of a Wizzybug. Glyn Brown finds out how masonic funding is giving more children like Finley the mobility to explore
If you can’t move properly, life can be tough and require a bit of assistance. If you’re a child who wants to explore the world yet can’t get around, things are more daunting still. But charity Designability is working to change children’s lives for the better.
A group of occupational therapists, engineers and design experts, Designability pools expertise and practical research to develop groundbreaking products. One of its most ingenious innovations is the Wizzybug – a bright red, motorised wheelchair that gives freedom to under-fives with a range of physical issues. And it’s benefiting from a £38,250 award from the Masonic Charitable Foundation (MCF).
A will to explore
Designability, previously the Bath Institute of Medical Engineering, is based at the Royal United Hospitals Bath; it’s here that the radical Wizzybug was trialled.
‘It came out of a conversation with the hospital’s children’s centre,’ says Alexandra Leach, Designability’s commercial manager. ‘It seemed children with movement disabilities were being restricted, kept in buggies and pushchairs way longer than other toddlers. Yet your average two-year-old is into everything, and by investigating they’re learning and understanding their place in the world.’
Leach notes that it must be frustrating for children with, for example, cerebral palsy and spinal muscular atrophy to be treated with such caution, as they have the same desires as any other toddler.
‘Finley was put into the Wizzybug and he was asked to drive it forward. “And he did! The smile on his face was just incredible.” ’ Rosalie Davies
‘The phrase for what can result is “learned helplessness”,’ says Rae Baines, senior children’s occupational therapist at Designability. ‘You can see how it happens. Carers, with the best intentions, can be overprotective. And some children eventually lose the ability to think and act for themselves.’
It must be hard for adults to stop this, though? ‘That’s where the Wizzybug is so great. At the very first assessment we see some parents who are used to stepping in, but we try to suggest that the way for their child to sort out how the bug works is to discover for themselves,’ says Baines.
The Wizzybug is for children from 14 months to about five years, an age group that the NHS in general doesn’t provide powered mobility for. The Wizzybug is operated by a simple joystick. ‘It doesn’t take long – sometimes during the assessment, they’re off and away,’ says Baines. ‘And you see this huge grin on their face – for the first time in their life, they can move.’
But allowing a previously immobile child to get from A to B is not all a Wizzybug can do. Baines explains: ‘It gives independence, autonomy about where they want to go. It provides environmental and spatial awareness and helps with manual dexterity and fine motor skills. As the child grows in confidence and determination, the brain gets a cognitive workout and begins to grow in size.’
All of which opens up possibilities for the future. ‘Because the Wizzybug is such a bright, friendly-looking device, it gets a lot of attention,’ says Baines. ‘So instead of passers-by maybe not knowing where to look if they see a disabled child, the child will be surrounded by amazed, impressed people. Which, apart from the wonderful social inclusion, helps the child’s communication skills.’
Children bond with their Wizzybugs, and give them names. According to Rosalie Davies, her three-year-old son Finley calls his Biz and, she says, ‘Biz really is the biz.’ Finley has type 2 spinal muscular atrophy, or SMA2. Rosalie and her partner Joel suspected a problem when he was about eight months old. ‘We could sit him and he’d sit, but he’d fall forward and wouldn’t use his arms to prop himself up, or if you put him on his tummy he wasn’t doing the little press-ups babies do.’
The discovery of SMA2 was made at 13 months. ‘It was pretty devastating,’ says Rosalie. ‘Atrophy means wasting away, so he’ll reach a certain point and then, if the nerves aren’t used, they’ll start to die.’ With hippotherapy building core strength, the Wizzybug can help with nerves and muscles in the neck, arms and hands.
The first day with Biz was ‘magical’. Finley was put into the Wizzybug and he was asked to drive it forward. ‘And he did! The smile on his face was just incredible. And I… well, I was a mess.’
Baines notes: ‘It can be an awful shock to find your child has a life-limiting condition. But to then find the Wizzybug, almost with a naughty character of its own…’
The mobility offered by the Wizzybug is just the start. When children grow out of them, they’re refurbished – each is robust enough for about three owners – but they will have taught children the skills to move on to bigger things. Rosalie and her family have started fundraising to buy Finley a powerchair. And because there’ll be no worries about him using it, she’s looking at a world that might involve all kinds of things – possibly including Paralympic sports such as powerchair football and bowls game boccia.
At Designability, the MCF grant will fund nine Wizzybugs. Leach says, ‘When we heard about the Freemasons’ grant, we were overwhelmed, and delighted when they came for a visit.’
And the MCF’s Chief Operating Officer Les Hutchinson couldn’t be happier. ‘Part of our mission is to help build better lives by promoting independence – for Freemasons, their families and the wider community. The free Wizzybug Loan Scheme is a great way to help children.’
For Finley and his mum, the impact is seen daily. Now, Finley can run away, ‘be naughty and cheeky’, and play hide and seek. ‘And I love him following me,’ says Rosalie. ‘I love walking a few steps and turning round, and there he is – things other people might take for granted.’
Wizzybug fact file
Each Wizzybug costs £4,750. This amount covers the build, assessment and refurbishments for other children.
As families with disabled children already have other outgoings, the only way these chairs can be made available is through the Wizzybug Loan Scheme, which is funded by donations and the fundraising efforts of local communities.
Invented in their current format in 2006, there are now 260 Wizzybugs across the country, but more applications come in every week as awareness grows.
FIND OUT MORE Get further information at www.designability.org.uk
LETTERS TO THE EDITOR - NO. 37 SPRING 2017
I read with interest your article in the winter issue of Freemasonry Today about buggies for children with movement disabilities, in particular the Wizzybug, a fun motorised wheelchair for under-fives, and the Masonic Charitable Foundation grant of £38,250 to Designability – an admirable organisation, if I may say so.
We of the South Cheshire Masonic Golf Society have for 40 years been engaged in the fundraising and purchase of our variant of this machine: a sporting, stripped-down version, at a cost of £3,800.
In June this year we celebrate the handover of our 50th powerchair at a nearby golf club. To celebrate the handover during the celebration of 300 years of Grand Lodge, our Provincial Grand Master, Stephen Blank, and his team will attend a presentation at the golf club.
As your account states, when children are first installed in these chairs and realise what can make them ‘go’, the delight on their faces is a great pleasure to witness – there is no dry eye in the house.
We recently made great strides in membership increases, raising our society membership number from 35 to 109, and we now include non-masons as associate members, which can increase funds raised and introduce people to Freemasonry.
Our powerchairs are a very stripped-down version, yet comfortable for children to sit in. They are adjustable as the child grows older and need an increase in chair size. This, together with a regular service programme, makes a bargain out of £3,800.
Our society was started by a Chester businessman back in the 1970s when he saw an article in a magazine about the Peter Alliss Masters organisation, which Alliss had set up with similar aims as ourselves: a summer day’s fun on the golf course and something for the community at the same time (enquiries welcome).
Gil Auckland, Loyal City Lodge, No. 4839, Chester, Cheshire
LETTERS TO THE EDITOR - NO. 38 SUMMER 2017
In the chair
A letter in Freemasonry Today, Issue 37, gave information on the aims of the South Cheshire Masonic Golf Society (SCMGS) and I thought it might be helpful if I provide further detail in clarification.
The society has indeed been in existence for 41 years as of now. In this time the members, and the lodges in the Cheshire area, have made some incredible donations to the cause of providing prescription powered wheelchairs to children who fall financially outside of the benefits or welfare system we have. We
I stress the word ‘prescription’ as many people are fooled by companies into buying off-the-shelf powered wheelchairs that are not suitable for the user. Ill-fitting chairs cause and worsen ailments. It is essential that chairs provided for the children are suitable for a span of up to five years. A growing child will easily have a specialised moulded seat replaced and adjustments made to the chair are that much better if the mechanics are correct at assessment.
There are national companies under the charitable banner who supply wheelchairs at an overpriced cost to cover the business. The SCMGS ensures that every chair is purchased at the most competitive price possible, enabling us to stretch our donations to the maximum.
The members of the society over the years have raised approximately £200,000 for the purchase of the wheelchairs; the 50th wheelchair is to be presented at Eastham Lodge Golf Club at the Cheshire Provincial Golf Day on 28 June. Our fixtures and forms are provided at www.scmgs.xyz for anyone wishing to support in any way.
A chair provides a child with a form of freedom that we, as able-bodied, ignore. It provides respite for a parent in the knowledge that their child is safe and able to be active of their own volition. To enable a child to socialise even a small amount, have friends and join in some fun and play can be a parent’s greatest wish and a child’s greatest happiness. A child’s laughter in play can melt the coldest heart. A small donation subscription is £10 per year and is always thankfully received.
We are so grateful to everyone who has supported this cause by even the smallest donation; every penny we receive goes to a chair.
Noel Martin, Loyal City Lodge, No. 4839, Chester, Cheshire
Learning to explore
Powered wheelchairs are enabling young children with mobility-restrictive conditions to explore and learn
Children under the age of five with conditions that restrict mobility, such as cerebral palsy or spinal muscular atrophy, can find themselves missing stimulation and interaction with other people.
To help to overcome this, engineers at UK charity Designability have created Wizzybugs. These powered wheelchairs for under-fives give young disabled children the independence they need to develop alongside more able-bodied children.
The Grand Charity recently donated £25,000 to Designability to fund the manufacture of six Wizzybugs. The chairs will be available to families across the UK through a free loan scheme, with each serving at least three children in its lifetime.
The Freemasons’ Grand Charity has just approved its first grants of 2014 totalling £842,500
Ranging from £10,000 to £100,000 each, they support nineteen significant causes across the UK.
Charities to receive funding include:
Blond McIndoe Research Foundation £50,000
Cancer Research UK £50,000
Epilepsy Society £50,000
University of Leicester £16,500
Chetham’s School of Music £75,000
Red Balloon Learner Centres £25,000
The Lord Mayor’s Appeal £50,000
Villiers Park Educational Trust £25,000
Carers UK £100,000
Fledglings Family Services £13,000
Parkinson’s UK £90,000
The Children’s Trust £13,000
The Queen Alexandra Hospital Home £60,000
Speaking about the Major Grants programme Laura Chapman, Chief Executive at The Freemasons’ Grand Charity, said:
'The Freemasons’ Grand Charity seeks to help people in need, and we are dedicated to helping people who are socially disadvantaged, disabled, seriously ill, homeless, or facing economic and social deprivation. It is our hope that the positive impact of these grants will be felt by thousands of people facing difficulties.'
Quotes from the supported charities
'Red Balloon is extremely grateful to The Freemasons’ Grand Charity for donating £25,000 to our Bursary Fund for places at one of our Centres in Cambridge, Norwich, NW London or Reading, our mini Centre in Braintree or on Red Balloon of the Air.
'This money will enable us to help the recovery of severely bullied children who hide under their duvets, depressed, self-harming and with suicidal thoughts unable to attend mainstream school.
'The donation will help us to provide more children with a full-time education and therapeutic support, to get their life back.'
Dr Carrie Herbert MBE, Founder and President, Red Balloon Learner Centre Group
'Raleigh International harnesses the passion and energy of young people to create positive change in very poor communities around the world.
'We are very grateful to The Freemasons’ Grand Charity for its support of our programme for disadvantaged young people – this will contribute to transforming lives abroad as well as in the UK.'
Alderman Fiona Woolf CBE, The Rt. Hon. The Lord Mayor of London, Trustee of The Lord Mayor’s Appeal, Trustee of Raleigh International
'We are extremely grateful to The Freemasons’ Grand Charity for their generosity in providing bursaries for high ability students from less advantaged backgrounds to attend our Inspiring Excellence Programme Courses which they would otherwise be unable to afford.
'Far too many able young people substantially underachieve, creating a major block to improving social mobility in the UK. With the support of The Freemasons’ Grand Charity we are working to overcome this through inspiring young people to fulfil their potential.'
Richard Gould, Chief Executive, Villiers Park Educational Trust
'Mind is delighted to receive this significant contribution towards the development of a smartphone app for our Elefriends online support network. At www.elefriends.org.uk, people with experience of mental health problems support each other in a safe and friendly space. This grant will mean that even more people with experience of mental health problems are able to give or receive peer support wherever and whenever they need it.'
Paul Farmer, Chief Executive, Mind
Further grant details
The Blond McIndoe Research Foundation has received £50,000 to fund research into the development of stimuli responsive materials, which are able to detect and respond to changes in a healing burn and diabetic wounds to help the repair process.
Cancer Research UK has received £100,000 to fund Dr Thorsten Hagemann’s pancreatic cancer research at Barts Cancer Institute. The Freemasons’ Grand Charity and the Masonic Samaritan Fund have both made grants of £50,000 towards the project.
The National Society for Epilepsy has received £50,000 to fund research into the genetic causes of epilepsy through exome DNA sequencing techniques.
The University of Leicester has received £33,000 to fund a clinical trial into the treatment of heart attack patients with the application of remote ischemic conditioning. The Freemasons’ Grand Charity and the Masonic Samaritan Fund have both made grants of £16,500 towards the project.
Chetham’s School of Music has received £75,000 payable over three years to fund the school’s community outreach services in disadvantaged areas.
Envision has received £25,000 to fund a community project in Bristol aiming to develop the confidence and skills of young people.
Red Balloon Learner Centres has received £25,000 to fund bursaries for severely bullied children to attend specialist learner centres, to build their resilience before returning to mainstream education.
SkillForce has received £100,000 payable over two years to fund the Onto Next Steps programme in Norfolk and Kent. The programme will mentor and coach pupils who are at risk of exclusion from education, and face subsequent unemployment.
The Lord Mayor’s Appeal has received £50,000 to engage with disadvantaged young people by funding Raleigh International’s youth agency partnership programme in the UK.
Villiers Park Educational Trust has received £25,000 to fund bursaries to enable disadvantaged young people to attend educational courses for raising academic achievement and developing employability skills, to help them gain places at leading universities.
Carers UK has received £100,000 payable over two years to fund its national advice and information service; providing expert advice and support on financial and practical matters for the estimated 6.5 million carers in the UK.
Designability has received £25,000 to fund the manufacture of powered wheelchairs called Wizzybugs for disabled pre-school children, which help them to get around with their peers and to learn spatial awareness.
Fledglings Family Services has received £13,000 to fund the cost of printing 26,000 copies of a brochure that will help families to find the best specialist products for children with special needs.
Mind has received £40,000 to help train 720 peer-supporters and to fund the development of a smartphone application, aiming to increase peer support hours by 20%.
Parkinson’s UK has received £90,000 payable over two years to fund the salary and costs of a Parkinson’s nurse specialist in Lancashire.
Phab has received £10,000 to fund courses on inclusive living experiences and skills for independence for disabled people.
Shelter has received £25,000 to fund its advice service in Norfolk. In 2012/13 the charity saw a 47% rise in people seeking help, and 2,400 households in Norfolk faced eviction or repossession.
The Children’s Trust has received £13,000 to fund the salary of the online co-ordinator of the Brain Injury Hub; a resource providing accurate information and advice to families on childhood acquired brain injury.
The Queen Alexandra Hospital Home in Sussex has received £60,000 payable over two years to fund the occupational therapy department; providing residential, nursing and rehabilitation services to disabled veterans and their dependants.