Joseph’s Equipment fund

Joseph was diagnosed with Spinal Muscular Atrophy (SMA) when he was 10 months old. He was diagnosed as a weak Type 2, which is similar to a strong Type 1. SMA is a life limiting condition which results in generalised progressive muscle weakness. He has never been able to crawl or walk, and over the years we have seen him lose strength in his arms, hands, neck and swallowing. He has a gastrostomy to help ensure he receives the calories and nutrition to keep him well. He also uses non-invasive ventilation at night to help with his breathing and to steer off potentially life threatening chest infections.

Despite all of this, Joseph is a beautiful, bright and cheerful little boy who does a terrific job of just getting on with life despite his severe disabilities. He has driven a powered wheelchair since he was 3 and loves participating in wheelchair football. He is also a very keen Manchester United supporter.

As a family, we have always endeavoured to keep Joseph's life as normal as possible. He attends mainstream school and has made some fantastic friends. However, Joseph is now reaching the age where the self awareness is kicking in and he is starting to get upset at not being able to take part in activities and often feels left out. As parents, this obviously breaks our heart, and we are always trying to look at finding new fun activities for Joseph to do. Unfortunately, because of his needs almost everything comes at a high price. He would love to join us on cycle rides but an adapted seat/trailer suitable for him is at least £2,000. We have looked at eye gaze technology to enable him to play games and do school work independently (his arms and fingers are getting so weak that he now struggles with an iPad). This again is in the region of £2,000. We also need to start looking at getting a portable hoist to enable him to visit family and go on holiday.

We have always worked hard to try and meet Joseph's needs and with the support of fundraising from his nursery a few years ago and kind contributions by family and close friends his needs have always been met. Such support has helped fund his first wheelchair and help contribute to the adaptations at home. However, these funds are now gone and his needs are increasing. Only just a few days ago we received a quote for £400 to replace the bald tyres on his wheelchair.

We have never been comfortable seeking financial help from others for Joseph as we have always felt it is our responsibility. However, we have come to realise that it is in Joseph's best interest to swallow our pride and be more proactive about fundraising for our boy to help him live his life to the full.

We are going to start the fundraising in time for his 8th birthday on 28th July. Joseph is very difficult to buy presents for as he cannot access toys. We would like it if instead of getting him a birthday present, you would consider making a contribution to his 'Equipment fund' instead.

In the longer term, we will aim in the next few months to run a 10km race. Whilst James will find this easy, anyone that knows me, knows I am not a runner! I will confirm the date and event soon.

Any contributions, no matter how small, will be greatly appreciated.

Many thanks for reading.

Nicola and James