In 2010/11 we were grateful to receive a substantial legacy from Catherine Gaskin -Cornberg, a long standing Friend of Ataxia UK, which she specified should be used to assist people with ataxia with mobility issues in their homes. During 2012-13 we introduced a grant scheme to distribute the legacy to Friends requiring adaptations to their homes. This scheme has now finished due to all the legacy being expended.
The Schofield family were the recent recipients of the Cornberg grant. Mum Sharon tells us just how significant the grant has been for her family:
Just a note to say thank you…
Just under 4 years ago now, we were devastated by the life changing, earth shattering, utterly devastating…you get the picture…diagnosis that our eldest son had Friedreich’s ataxia, and just a few short months later that same year we learnt our youngest son also had the same diagnosis. Piers and Lucas were then aged 16 and 13.
There isn’t a word to describe how tough it was; in fact tough is an understatement. But kindness is the word that comes closest to what has brought a measure of healing to us as a family. The kindness shown to us in all manner of ways from those who were already part of our lives and the kindness of those we had yet to meet on this journey.
It was evident quite quickly that changes would have to be made to our family home and plans were made for a two-phase project to adapt our home for two wheelchair users.
Phase one: build a downstairs bedroom and level access bathroom, with independent access via a ramp and automatic front door for Piers at a mere cost of £54,000…
Phase two: install a lift, level access bathroom and automatic doors at the front and back of the house, a level access garden area and ramps to the front of the house for Lucas at an additional cost of £36,500…
I wish I could tell you we had that sort of money, but no, we are like many, an average income family. Each of the boys would qualify for a Disabled Facilities Grant of £30,000 and all additional funds would have to be sought from charitable funders. We felt really uncomfortable, we had never needed such help before, how was it possible? Where would we turn? I don’t know about other areas of the country, but here if you use Yorkshire Housing to manage the grant and work, they have a wonderful woman who helps with this process.
You get the picture, we needed help and we were all over the place with anxiety, fear, stress and sadness, and then we made contact with Ataxia UK and a local group, and found out about the Cornberg Foundation and decided to ask for help towards the funds needed. They were so sensitive and generous of spirit, the application process was simple and we were kept in touch every step of the way. Not only were they able to help with Piers’ build, they also accepted another application for Lucas and were able to help him too. As I sit and write this I think of the times I spoke with Tina Thatcher, her reassurance and help was precious.
So where are we now? Piers has his fabulous independent space, he can come and go without the worry of using a key on the days his hand don’t want to work. Phase 2 began a week ago and so as I write, we are in the midst of chaos but our builders are lovely. In fact everyone involved in this process has been amazing, not least of all the Cornberg Foundation, without whose support we wouldn’t have been able to achieve the significant changes within the home that make it perfect for Piers and Lucas, they can be safe and secure in their own home and that is priceless.
From the Schofield family, a heartfelt thank you x