Update!!! We have done it! We have raised enough not just for the basic trike but for the full trailer trike. We are so grateful to you all. You’ve all made a little boy very happy! xxx
Dear all,
Following so many supporting comments and offers of help over the weekend, we have decided to formally launch our first ever equipment appeal. As part of this we have registered for a crowdfunding account with GoFundMe, where people can donate.
[This link has been removed because we reached our target, thank you!]
Bertie has muscular dystrophy for which there is no cure. He cannot ride a regular bike but wishes he could!
Although he can walk a little, he uses a wheelchair to get from A to B and is often on the sidelines, unable to join in with regular play. We want to change this for him by getting him a Tomcat Trike, a custom-built disability trike that will have carer control but give him some pedalling and steering input. The Tomcat Trike has a special seat to give vital postural support (we’re trying to avoid curvature of the spine in Bertie’s condition). It is also meets his needs in terms of muscle tone and can be adjusted for height etc to make sure it isn’t putting the wrong kind of stress on his muscles and joints.
We can see what a big difference it would make to his quality of life and Bertie’s consultant, Prof. Stefan Spinty at Alder Hey Children’s Hospital, has said that Bertie would hugely benefit:
The latest medical research tells us that although children like Bertie have weak and declining muscle strength, what muscle power they do have, they need to use, or they will lose that too.
What all this means is that the trike isn’t just the great fun it appears but is also is of significant therapeutic importance.
Tomcat trikes are made in the UK in Gloucestershire: http://tomcatspecialneeds.co.uk/
As a family it is a challenge to pay for disability equipment and like most parents of disabled children, find ourselves in a constant round of applications to charities. We’ve not been getting very far with Bertie’s trike application as charities for disabled children are overwhelmed in the present climate. Bertie’s application for a trike was recently turned down for a second time on his birthday. [The external funder had hidden criteria that cannot be revealed to us and we don’t meet that criteria.]
Fundraising Events!
Thanks to the enormous kindness of our local community, we now have a number of fundraising events in the pipeline over the coming months ranging from a bucket collection at Tesco, to a car wash and a race night. If you have an ideas, please let us know! We need to raise just under £2000 for the basic trike or £2300 for a trailer trike (a trike that converts into a trailer to attach to the back of a bicycle and also enable Bertie to join in on family bike rides.) * Obviously the closer we can get to either of these fundraising targets, the more possible it will be for us as a family to make up any short fall, one way or another.*
** If you know of any local businesses that might match fund or donate please do ask them or let us know.**
- First event: Cleveland House Family Fun day – Saturday 2nd July, Greaves Hall Ave, Banks, Southport PR9 8BL
This Saturday, Cleveland House (brain injuries unit) will be fundraising for Bertie’s trike as part of their Family Fun Day – thank you! It is incredibly generous of them. Come along for a fabulous afternoon: Sat 2nd July 10-5pm. There is a bouncy castle, face painting, live music, cakes and more! Update!!! £620 raised
- Second event: Tesco bucket collection – Saturday 23rd July, Kew Roundabout, Southport
Thanks to our wonderful friends, more event news to follow!
Many thanks,
Ali, Matt, Bertie, Archie & Emmeline xxxxx
P.S. Here is a video testimonial on the Tomcat Trike from another family: