Donation protected
We are Team Barnett! Jamie (Dad) and Sophie (Mum) live in 'sunny' Cornwall with our daughters, Thea, Corinne, and Laurel.
Our daughter Thea is preparing for a bone marrow transplant which, if all goes as planned, is curative in her treatment for her Primary Immunodeficiency which is an incredibly rare genetic condition in which she is the only child in the UK currently known to have it. Currently, Thea’s immune system doesn’t work properly, meaning that she frequently gets infections requiring oral and IV antibiotics. She has had some other complications due to her condition, which her medical teams are managing long term.
Last year, she was in hospital for just under 6 weeks as her spleen tore and she had internal ulcers due to the treatment to shrink her spleen.
This is a very intense journey coming up that will mean long hospital stays, time away from home, 1-2 600 mile round trips a week and a lot of extra challenges for our family.
Lots of people have asked how they can help. Honestly, we have held off doing a page like this, We’ve set up this page to support with the practicalities around Thea’s treatment. We have purposefully set the target level as low as the site would allow and it's set to auto-adjust the target level, we are so grateful that you are even considering it by being here. We have no expectation of donation, but the option is now there for those who wish to!
We have put a bit of what we currently understand her treatment plan to look like. There is some more information in links below if you fancy reading:
Her treatment is planned to start on the 29th September 2025 with a double operation >10 days beforehand to fit a feeding tube and other precautionary work.
Thea will be in hospital for ~8 weeks, it could be more, it could be less. She will start in a fully isolated, positive pressure room with filtered air to help lower her risk of infection while she has 7 days of chemotherapy to destroy her own bone marrow. The prepared bone marrow from her donor (her twin sister, Corinne, also known as her ‘donut’) will be put directly into her central line, into her blood stream.
After this, once her new blood cells start to be made properly, around 2 weeks later, she may be able to go to a slightly less controlled space. This allows her to leave her room during quiet hours. She will still be monitored around the clock by the specialists to ensure that the transplant is going smoothly and there are no unexpected issues.
Further down the line, she will be able to come home, around 8 weeks later! Thea will not be allowed around groups of people for around 6 months and only having one visitor at home at a time. This is to help ensure that she doesn’t catch any virus’ or infections, as her immune system will still be severely weakened. Our current understanding is that she will need to be checked in London twice a week (lots of travel, and no service station stops!) to check that her body isn’t rejecting the new bone marrow and there aren’t any unexpected adverse effects.
Your support will go towards:
• Travel from Cornwall to London for parental swaps, respite during her admission and frequent checkups post-transplant
• Food costs for the parent staying in with her, as food is not provided to the parent by the hospital. There is only a microwave and very strict rules around food.
• Snacks for Thea when she feels well enough to eat
• Clothes for Thea + parent as there will be daily 60c washes of every item of clothing
• Professional cleaning service before Thea comes home as the house will need to be pristine on her arrival home
We are so grateful for any donation, kind word, and other support! No amount is too small, it all helps us get through this incredibly tough time. Thank you for standing with us as we support Thea through her bone marrow transplant and towards a brighter, healthier future.
Organizer
Jamie Barnett
Organizer
England