Six months ago, meeting with my friends for a wander round town or a night out was no problem, now I struggle to go upstairs to my bedroom. I am dependant on oxygen a lot of the time and need someone to carry this for me as I cannot lift any significant weight due to the PH. This severely limits my quality of life and my independence, which at 19 absolutely sucks! When walking any distance, even the short walk to my local park, I need to use a wheelchair as I simple do not have the breath or energy to walk this on my own. I absolutely hate the wheelchair but unfortunately it's my only way of getting anywhere.
I'm desperate to go to uni to study psychology, however I have been held back 2 years in sixth form due to ill health. I've just spent a month in Kings College Hospital London, and after a month of intense physiotherapy and IV antibiotics, I came home at the point at which I'd usually be admitted to hospital. The hospital is over 50 miles each way from my home. This makes it very difficult for friends and family to visit me, so it was a very lonely and difficult month.
Because I'm not responding to the usual treatment like I used to, the next step for me is a double lung transplant. This is beyond terrifying for me, as while organ donation and transplantation are a miracle in themselves, the sad fact is the demand far, far outweighs the supply as so few organs are donated. Very sadly, this results in 1 in 3 CF patients dying whilst on the transplant waiting list.
After many, many hours of research, my wonderful mum found an new and alternative treatment to lung transplant which helps repair and heal the damaged lung tissues as well as provide healthy, working cells in my lungs which will slow down the progress of the CF. This treatment involves harvesting adult stem cells from my bone marrow and that of a genetic relative who does not suffer from CF, mixing the two, educating and activating them to become lung cells, then putting these new stem cells back into me via an IV line.
This has given me such hope, and has helped lift my spirits and put me back into fighting mode where I had almost given up before. It also means any donated lungs can go to someone who doesn't have any other options as this treatment is not a viable option for everyone.
The only downside to this is that it will cost £55,000 for the initial treatment!!!! :O I have a very limited window due to my rapidly declining health. Funds raised will go towards this and all the ancillary costs, and if we manage to raise more than £55,000 then any remaining funds will go towards further treatment.
We've got a GoFundMe page for donating! We're trying to gain support from within our community such as schools and businesses so if you know anyone who could help please invite them! Your individual support and donations are just as important and amazing though, regardless of how big or small! Every penny really does help, as there are many other ancillary costs involved in getting this ground-breaking treatment.
Thank you all so much for all the support you've shown already. It means so much to me, please keep it up, like, share and please please please donate!
- Jo Robertson
- Jacky Francis
- Lydia Boyd
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