Wheelchairs
At the moment, the average age a boy with DMD loses the ability to walk is nine years old. However, all of our sons are different and many may need a wheelchair for occasional use before they are unable to walk.
Eventually you will need to consider an electrically powered indoor/outdoor chair - EPIOC. This type of chair is available from the NHS Wheelchair services and will have specialist features like tilt, seat height adjustment and recline. In some areas of the UK this type of chair might not be provided until complete loss of the ability to walk.
Funding for powered wheelchairs is limited and there is a waiting list.
Seating position is a vital consideration as poor seating can cause bad posture and spinal curvature. The back should be straight with weight evenly distributed through the buttocks. The feet must be flat on the footplates.
You can buy a powered chair yourself. But get an assessment by a qualified occupational therapist or physiotherapist. Don't just go with the sales pitch!
You can use the mobility component of your sons' Disability Living Allowance. But these organisations might help:
Whizz Kids
1Warwick Road London SW1 5ER
0207-233-6600
The Variety Club
93 Bayham House
London
NW1 0AG
0207-428-8100
The Caudwell Charitable Trust
Minton Hollins
Shelton Old Road
Stoke on Trent
ST4 7RY
0845-300-1348
Joseph Patrick Trust
Muscular Dystrophy Campaign
61 Southwark Street
London
SE1 0HL
0207-803-4800
Route2Mobility
Newbury Road
Enham Alamein
Andover
Hants
SP11 6JS
0845-6076-260
Watch out for expensive maintenance contracts - keep money for repairs and contacts for good engineers.
In some cases Wheelchair Services will offer a voucher towards the costs of your chair. This will only cover part of the costs.