Weʼre raising £2,000 to make a wish come true for our life-limited disabled daughter to be a bridesmaid at our wedding vow renewal ceremony
- Ulverston, UK
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Let me start off introducing our family. We are the Thorpe's, dad, Jamie, mum, Catherine and our three children, Joshua (14), Bethanie (12) and Samuel (6).
Our daughter, Bethanie has been very unwell recently. She was diagnosed with Friedreich's Ataxia (a degenerative, life-limiting, neuromuscular disorder) and Cyclical Vomiting Syndrome when she was 6. She is now wheelchair dependent, and relies on one to one care with all aspects of life. She was recently also diagnosed with Insulin dependent diabetes. Having one of these illnesses is quite rare, but having all three is almost certainly unique - we are led to believe she is the only person with all three conditions. Samuel has also been diagnosed with Friedreich's Ataxia, and is beginning to deteriorate rapidly.
During the last year Bethanie has been admitted to hospital 60 times with Cyclical Vomiting episodes, which has had a major effect on the whole of our family. As you can imagine this has been a very stressful time for us. This also meant that we have lost the last year of our life.
One thing that has kept Bethanie going during the many low points of the last year was that she was due to be a bridesmaid for her cousin this summer. Anyone who knows Bethanie knew that this was a big thing for her, she was really looking forwards to not only being a bridesmaid, but also to getting away for a few days, as this is something we have also not been able to do, due to her health. The rest of the family was also looking forwards to this. It was meticulously planned, including contacting the local hospital in Derby just in case she needed to be admitted.
Unfortunately, Bethanie ended up in hospital the morning of the wedding, and sadly missed not only being a bridesmaid, but also spending time with her extended family whom she has not seen much of in the past few years. This was devastating for not only her, but us, as her parents. The photo we chose shows how she spent her time when she should have been enjoying being a bridesmaid.
Bethanie's health continues to deteriorate, as does Samuel's. As you can imagine, as parents, being told that you will almost certainly outlive two of your children is devastating enough. The one thing that we wanted to do was make sure that they have as many good memories as we can. Bethanie spending so much of her time in hospital on heavy sedation and medication (which has a very detrimental effect on her mental health) has basically meant that we cannot make any plans, as most plans we do make end up being cancelled as she is admitted to hospital. This means that, particularly over the last year, we have been surviving, not living.
With everything that has happened, it has put a lot of pressure on our relationship, but despite this we find ourselves more in love than ever. We were hoping to renew our vows on our 20th wedding anniversary (in 2021), but because the children are deteriorating so rapidly, and we do not know what the future holds, as well as the disappointment of missing the wedding this summer, we have decided that we would like to renew our wedding vows next summer (2019), and call it our "nearly 20th" anniversary.
As you can imagine, this is going to mean an awful lot to our family, enabling Bethanie to achieve one of her lifetime dreams, as she may never get the opportunity to be a bridesmaid again. It is also going to be a very special time for Joshua and Samuel, as they will be able to make special memories, and have their own important jobs too.
Please, please, please help us to make this come true. We both had good jobs before the children were diagnosed, meaning that money was not really an issue, and we had enough to get by. Since the children have deteriorated so rapidly, and are needing so much care, and have so many appointments to attend, we have both had to give up our jobs, and this is why we are asking for help. The celebration is not going to be elaborate, we are just wanting to make amazing memories for all of us. We live in the village that Catherine grew up in, and have a very special relationship with the local community. Anyone invited to the celebration is also very aware of our situation, and this means that, in the event that any of the children are ill, we will be able to rearrange the ceremony very quickly.
Thank you for reading this, and for any small donation you feel you can make.
Catherine and Jamie
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