Weʼve raised £8,377 to help support Bailey & our family whilst he has a stem cell transplant to treat an aggressive form of crohn's disease.
- Funded on Saturday, 25th May 2019
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I feel it’s time to share Bailey’s continuing journey with you! You’ve all been such amazing support to us as a family but most of all to Bailey.
In August a scope found more disease in his small bowel, only having 200cm left surgery wasn’t a wise option.
He has reached the end of any standard care, tried every medication known & numerous surgeries to still suffer chronic pain & debilitating consequences.
His Professor in Oxford sat us down & told us about a radical treatment which has only been done to six Crohn’s patients.
This is a Stem Cell Transplant!! 😞
It’s comes with risks but who am I to tell Bailey that he has to be so poorly for the rest of his life.
It’s not me lying in bed, constantly suffering, barely getting out the house. It’s robbed his education, childhood, teenage years & still remains to steal his life from under his nose.
It knows no bounds & doesn’t give him a break, not only does it effect him physically but mentally.
We all need a reason to get up each day & live our lives, but what’s Bailey got to get up for??
It breaks my heart & that knotted feeling in the bottom of your stomach when something’s wrong hasn’t left me in nearly 9 years!
This transplant isn’t a cure, there is no cure but it may help him become pain free for a while which will allow him to start living his life.
This is not a quick process, in a few weeks they are harvesting Bailey’s stem cells.
Lots of tests/ appointments before that & Bailey has to see a fertility consultant to preserve his legacy.
Then he is on a live list.... which is constantly moving up down & sideways.
The transplant can be 2 weeks after the harvesting or up-to 2 months.
This means Bailey will have high dose chemotherapy, dangerous infact.
Chemotherapy will be given at harvesting then again before transplant where his will be in hospital for a long time.
This is the most dangerous time for Bailey so we need to make sure he doesn’t come into contact with any germs/viruses.
It’s every parents nightmare I’m sure you’ll agree, life can be cruel however we are remaining as positive as we can be for now.
I’ll likely break amidst his treatment but I’ll do that as privately as I can.
Your support does make a difference & we are very grateful.
The financial impact this will have on us is going to be tough.
Having a long time off work, being by Baileys side throughout the treatment, so needing somewhere to stay in Oxford, travelling up & down trying to juggle our home & sons, Bailey will need something to look forward to when he’s well... maybe some time away with friends! Unfortunately the fertility isn’t funded on the NHS so we will have to go private. Big costs from the start then cryogenic storage fees every year.
We thank you from the bottom of our hearts.
Thank you for taking the time to read this
The Johns Family
- 2 months ago
Clare Johns2 months ago
Update...... We've been up & down to Oxford weekly for meetings & tests.. We now have a date for his stem cell transplant!! 25th April This is going to take every last ounce of strength from Bailey & our family. Your support has meant the world to us & we will be eternally grateful. I will keep you posted on how his transplant goes. Much Love Clare, Andy, Corey, Bailey & Harvey xxxxx
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Clare Johns started crowdfunding
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May 10, 2019
I hope you all realise that your story about Bailey has touched families of Crohn's sufferers. Bailey I am sure you will get to do some of the things you have missed out on and so much more x
May 9, 2019
so moved by your plight Bailey,after hearing your story on radio 5 live....all my fingers and toes are crossed for you
May 9, 2019
I listened to your story on Radio 5 and felt compelled to find out more about Bailey. Good luck with the stem cell transplant.
Apr 19, 2019
Mar 29, 2019
Wish you all, all the best with Bailey. Your a very strong family, may the good lord continues to bless you all. ❤️
Mar 14, 2019
Love to you all x
Mar 12, 2019
Sending love & hugs to you all as you continue on this difficult journey xxx
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