Fourteen year old Kai Shah, from Hertfordshire, has Merosin deficient congenital muscular dystrophy, and uses a powerchair to get around. When he outgrew his previous chair, Kai’s family found that a suitable replacement would be beyond their budget. Thanks to a grant from the Joseph Patrick Trust, he now has a new powerchair that caters for his complex and changing needs, and which he likens to a rather fancy sports car.
Kai’s mum Sonia told us about the difference the grant has made to Kai:
As a growing child, Kai outgrew his old chair and was finding it difficult to get comfortable and was getting aches and pains on his hips and back
The new powerchair keeps Kai comfortable and supports his posture, which is vital, as he has severe curvature of the spine. It also allows him to stretch out his legs and recline when he gets tired. The chair also raises to stand-up height allowing Kai to talk to people at their level.
The chair came at a huge price tag, beyond our budget, and with the generous help of JPT and other charities, Kai became a very proud owner of his much needed chair
Kai has now received his new powered wheelchair and is over the moon about it! His face lit up when he received it and he calls it his ‘Porsche’! It’s made a huge difference to him, helping with his wellbeing and independence.
Thank you so much JPT and MDUK, you’ve made a huge difference to Kai’s life and he is one happy chappy!
The Joseph Patrick Trust is the grant-giving arm of Muscular Dystrophy UK, and provides funds towards specialist equipment for children and adults with muscle-wasting conditions. The aim of the Trust is to promote independence and quality of life.
Grants are awarded for equipment not available through statutory services, including wheelchairs, scooters, and mobile arm supports. The Grants Panel are also keen to award grants towards communications-based Assistive Technology.
The Joseph Patrick Trust meets four times a year, with the next panel meeting scheduled for 7 February 2018. Applications are anonymously assessed by a panel of service users, parents, and professionals from around the UK.
If you are interested in receiving a grant, the deadline for new applications will be 24 January 2018. After this date, the next deadline will be 25 April, for the 2 May panel meeting. Interested applicants are required to fill out a form, and supply a quote for the equipment and a supporting letter from a health professional.
For further information about JPT grants, please visit www.musculardystrophyuk.org/jpt or contact the team on 020 7803 4811.