Hi, I’m Larraine and I have MPS IVA Morquio. The MPS Society has asked me to share my story with you all for this year’s Big Give Christmas Challenge.
One of the areas where they helped me was adaptations for my home. I was having issues with my housing association after they updated my kitchen. They replaced my accessible worktop with a standard worktop which meant that I was no longer able to prepare food independently. This was so frustrating, it felt like I had been stopped from doing something so basic for myself.
After talking to Sally for the first time I felt like someone was on my side and could hear what I was saying.
I spent months trying to contact someone at the housing association to rectify this but my calls and emails were ignored. I was telling a friend about the difficulties I was having with the housing association, and how I felt like I was banging my head against a brick wall. She told me to give the MPS Society a call and ask for Sally. I’m so glad I made that call. After talking to Sally for the first time I felt like someone was on my side and could hear what I was saying.
It was only thanks to Sally’s advice and intervention that I got a response and they took me seriously.
Sally gave me advice about what my next steps should be and contacted the housing association herself on my behalf. It was only thanks to Sally’s advice and intervention that I got a response and they took me seriously. I have since had an appointment with an occupational therapist who requested a height adjustable worktop for my kitchen so I can go back to preparing food independently which will make such a difference to my life.
Without Sally’s support I think I would still be trying to get a response from the housing association. I am eternally grateful for all the continued support from Sally and the MPS Society.
If she wants a drink she has to climb on a chair to reach the tap and risk falling and injuring herself. I’ll keep on until we get a result for her.
Sally, one of our support and advocacy workers, has been working with Larraine for the past year to help get her back in her kitchen and cooking independently. She said: “it’s outrageous that Larraine has been denied the basic human right of getting herself a glass of water in her own kitchen. If she wants a drink she has to climb on a chair to reach the tap and risk falling and injuring herself. I’ll keep on until we get a result for her.”
This year we would like to raise £25,000 to help fund the Support and Advocacy Team so that Sally and the rest of the team at MPS Society can provide invaluable support to people like Larraine. We all need someone on our side helping to fight those battles, and we want to make sure we’re always here whenever we’re needed.
If you want to help, all you need to do is make a donation between 12 midday on Tuesday 29 November and 12 midday on Tuesday 6 December. During this time, donations will be matched pound-for-pound at no extra cost to you meaning your donation will be worth twice as much to us and the people we support.
Just visit www.mpssociety.org.uk/biggive between those dates to donate online.