View the completed 'Room4Reuben' here.
What are we fundraising for?
Having now received the building quotes the lowest tender was significantly higher than the quotes and so we have had to raise our fundraising target
The funds we are raising are for us to provide Reuben with a downstairs bedroom with en-suite level access shower room and access to a safe garden suitable for him given his physical and learning disabilities. To enable us to provide a downstairs bedroom for Reuben we need to extend our living space to ensure we have sufficient space for Reuben to move freely around, and to accommodate his specialist supportive chair for eating and his kaye walker. Reuben is being supported by a Social Care Occupational Therapist and the adaptations have been approved by them – he is receiving a grant towards these adaptations – however it does not cover the whole cost – so we are trying to raise funds to cover the difference.
What difference will these adaptations make to Reuben's life?
These adaptations will make an enormous difference to Reuben’s life – he will for the first time have his own bedroom! He will be able to access his bedroom and shower room independently without needing to be carried or supported on stairs which are a real danger to him. The flat level access shower will enable us to access a shower with him much more easily than our current bathroom allows and enable us to meet his toileting needs in a dignified way. As he grows we hope the easy access shower room will enable him to develop some independence with toileting and washing. Extending our living space allows us to create this downstairs bedroom for Reuben and still gives us enough space for his equipment and for the rest of the family to live in.
Giving Reuben a safe accessible garden space will make him so happy! He wants to be out there all the time in the spring, summer and autumn with his two sisters and he needs a lot of support to access it right now due to steps and a concrete base. The garden plans for Reuben will enable him to not only be safe but to develop more independence in his play with his siblings and friends.
View the completed 'Room4Reuben' here.
FEBRUARY 2019 - 12 MONTHS LATER.........!
So here we are 12 months later - what has happened in the last year!
Let's begin with Reuben!
Reuben has made great progress in the last year - he is now walking! He wears a lycra suit and leg splints all day every day to help his posture and balance and this has helped him to learn to walk - he can walk around indoors and in smaller outdoor areas without his kaye walker now. He can't walk long distances and uses his kaye walker still in bigger outdoor spaces like his school playground and parks. He still struggles a lot with balance and coordination and falls a lot - so the improved downstairs living space and safe garden will really help to keep him safe.
He started our local specialist school in September - it was was sad to see him and his twin go off in separate directions to separate schools - but this is absolutely the right school for Reuben - he has settled in really well and loves it - and they all love him. I am told all the time how sociable cheeky and funny he is! His language is developing - albeit it very slowly - he has an increasing number of single words - we his family understand these - but not everyone else does! He is using some signs too.
Reuben's epilepsy has worsened in the last 12 months with an increase in absence seizures that have delayed his development further. It it is proving to be drug resistant so we are looking at alternative treatment options.
We still have to second guess a lot of Reuben's needs, he has no real understanding of danger so he needs constant close supervision and support with everything. The adaptations to the house are going to make such a difference to him and us - simple things like having a stable door on his bedroom and kitchen mean we can separate him from risks to keep him safe without closing him off altogether or containing him in his chair. Stairs remain a big danger so his bedroom downstairs is needed more than ever now as he is growing and becoming more physically able - which presents lots of new risks! And knowing that this spring/summer we will have an accessible safe garden where he can play without constant risks of hurting himself is such a huge relief and pleasure to us!
So how is the work coming along?.......
We are almost there!!!
The extension is up and this week the roof light should be in and the internal walls will be boarded and plastered. Over the next couple of weeks the space will be decorated and the flooring laid.
Reuben's wetroom - the tiler is completing the tiling today and within the next couple of weeks the floor will be laid, the sanitary ware fitted and the bedroom carpet laid.
The garden - tomorrow the guys start building up the terrace area off the extension and creating safe railed access down to the lower garden area - and by mid March the artificial grass will be laid in the garden - and a beam erected to
suspend 3 swings for our wonderful 3 children!
So...... by the end of March it should all be complete!
We have been amazed by all the fantastic support our fundraising appeal has been given - we are still short of about £5,000 - and I am continuing to apply to relevant funding bodies in the hope that all the costs can be met.
Watch this space for news of when the project is complete!
And thanks to all of you who have supported us.
Lily-May and Ali's 1.5km challenge
Reuben's big sister Lily-May and his Godmother Ali are swimming further than they have swam before in a collective 1.5km sponsored swim challenge in support of a very special boy who they love very much. The swim is taking place on 8th April and they are working hard preparing and collecting sponsors. Reuben's big sister wrote this delightful poem about what she is doing and why!
Sponsored Swim
Reuben, Reuben, Reuben, Roo I love you lots, like I do
I am also doing a sponsored swim for you
It is my first time – so it doesn’t have to be divine and I very hope I like it!
I’m doing 25 lengths but I’m going to try to do 30
I hope I don’t get too thirsty!!!
By Lily-May Betty Woods age 7 (Reuben’s big sister)
Sullivan’s Heroes is a charity offering support and financial assistance for families raising essential funds towards vital home adaptations for a disabled child.
Registered Charity Number 1163021.
Copyright © 2023 Sullivan’s Heroes. All rights reserved. Registered Charity Number 1163021.
Reuben Woods