In 2017, at just 35 years old, Claire’s life changed overnight after finding out she had a rare and degenerative neurological condition.
The impact was massive for Claire and her family, turning what had been a typical life with her husband and children into one filled with uncertainty.
Claire sought emotional and social support during this challenging time. She reached out to Paul’s Place via email.
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From: Claire
Sent: 17 May 2017 21:15
To: Info@paulsplace.org.uk
Subject: Enquiry
My name is Claire and I am looking for some advice and assistance.
I have been recently diagnosed with Spina Cerebra Ataxia-17; it is a relatively un-researched genetic neurological degenerative condition.
I have recently had to surrender my driving licence, which had a huge effect on my ability to socialise (even though I have not been able to physically drive in a number of years) having the licence made me more positive on the future, without it and with the recent diagnosis being made and a timescale given to me I have found that I am increasingly isolated.
I have two children and a husband; my children are twelve and nine and my husband works full time. I am finding that my days are not fulfilling and as a result, the time I have with my family is being wasted as I am sad about my condition and what the future holds for us.
For the first time in a long time I have this evening met an old friend for coffee to let her know about the letter of my diagnosis. We talked at length about the impact of my condition, my speech will degenerate as will my cognitive functions and we began to look into ways to get me socialising again and came across your website.
I do not know if you will be able to help me moving forward or exactly what it is you offer. Your website and write up attached to it were encouraging with regards to trying to move forward with this. As my condition is so under researched the support groups and social gatherings are not as widely available as others and so I am at a bit of a loss as to where I turn.
Thanks
Claire
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Shortly after joining us, Claire found a welcoming community and a range of programmes.
It became a beacon of hope for Claire and her family. We helped her maintain confidence, purpose, and connection, even as her condition progressed.
Claire loved our arts, crafts and music sessions, and accessible day trips, all of which brought her joy, independence, and a chance to express herself. She especially treasured our pamper days, which made Claire feel herself again.
When her condition became worse, she lost her ability to walk and speak. Claire and her family found this extremely hard. But they knew that when she was at Paul’s Place, she was safe, cared for and enjoying her life.
Sadly, Claire passed away in 2023. It was devastating as everyone thought she had more time.
Her husband said:
“Paul’s Place was a special place to Claire, she was able to be herself, have fun, and always talked about her day when she returned home. It was particularly great seeing her return home after a pamper day at Paul’s Place looking glamorous. Her time at Paul’s Place gave me some time to myself and helped me to carry on working. As a family, we will always be grateful”.
Becoming a regular donor helps more people like Claire. It will make sure support is available for those who may need it one day, perhaps you or someone you love. By contributing regularly, you will help us reach more people with support and friendship when they need it most. Together, we can help disabled people rebuild confidence, discover new goals, and live life to the full.