Support Louise Thomas
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Lousie’s Story ❤️
Louise and her sister Serene were very young when things first started to change for them, Serene was only 7 was first investigated for blood disorders and different cancers, Louise was 9 and firstly was supposed to be Serenes bone marrow donnor.
When they started testing Louise they then found out she was also suffering from the same disorder. Investigations went on for 5 years; the years were full of hospital appointments, blood and platelets transfusions and many infections.
Doctors in Cardiff and Bristol were in contact with Genetic doctors in America. They found out that they both had Dyskeratosis Congenita; which is a genetic teleomere disorder, only 200 people in the world have it.
Serene and Louise spent time at the heath under Latch and TCT, Serene had her bonemarrow transplant in 2014 and Louise had hers in 2016. Serene always said our second home was the hospital which is true, for years they went back and forth but always seemed to try and have a reasonable good lifestyle considering the circumstances. Thanks to their mam Jeanette and dad Kevin the girls were always protected and kept them safe but also let them live.
Serene suffered with a lot of lung infections after her transplant, eventually causing her one side of her long to collapse but Serene still carried on, playing darts for the Cross, going out with friends and family plus a relationship which she never thought would be possible. Serene passed away in February 2018, the family were distraught and never saw this coming, the girls have always been ill but also so strong that this could not seem possible. Serene is missed dearly by her family and friends, she was such a strong character who did believe to live every moment like its her last.
After Louise's transplant she also had many issues due to infections and other complications. In 2017 Louise had Graft vs Host disease (gvhd) where she lost her skin, her hair for the second time and also the ability to walk.
Louise kept having many infections causing her alot of her life to stop and start however it's fair to say she always tries not to to let it stop her. She always will be a social butterfly. Loves to go out, party and just enjoy life.
August 2019 Louise applied for a job with the Welsh ambulance service in the contact center answering 999 calls, she loves this job and was something that suited her interest in people, care and aiding those in need. October 2019 Louise had a bonemarrow test which she has every year to check on her donor. Louise was also having this as she was suffering from many uncomfortable ulcers and infections, the test had gone wrong and caused Louise to have an infection in her bone, Louise still went back to work at this point but then fainted a couple of days later causing a hospital admission and more news. After xrays and scans louise found out she had necrosis of her hip, she was devastated as she could never play netball again plus at some stage may have to have a hip replacement, the necrosis was due to the steroids she was previously on for the gvhd, only 1% of people this affects, lucky right ??
Louise had to have time off work until January then started back once again, Louise met Scott inJanuary to, she never thought of falling in love and having a life with someone because life was so complicated but she finally let her guard down and wanted to start a life with him
Then pandemic happened where she had to sheild from March to August.
When Louise went back she was determined to get back and fighting fit she run 100 miles for TCT in August and going back to work loving her job everything seemed pretty great.
October 2020 once again infections start but something different, Louise has suffered with ulcers for two years causing her to be uncomfortable but it started to get worse where she couldn't walk due to the open wounds and as her immune system is not to good louise found herself going back and forth the doctors needing antibiotics and creams.
Louise found it hard as she had pain in her back and stomach, days were full of hot water bottles and pain killers, even though Louise is under many doctors nobody wanted to listen she even booked a private doctor as something wasn't right.
After many months of pain and upset Louise was admitted to the heath thinking it may have been herpes simplex causing pain on her spine. However the mri and ct scans showed that it was cancer.
Louise has now recently been diagnosed with bladder and lymph nodes secondary cancer, she currently under the drs in Velindre which have looked after her so well, first protocol was chemotherapy but the chemo is causing Louise's platelets to drop and is at risk of a stroke.
Louise is now going to start immunotherapy within the next few weeks and there may be other alternatives on the way to. So we are hoping we can help Louise and Her family as much as possible, in any way we can ❤️
Louise and her sister Serene were very young when things first started to change for them, Serene was only 7 was first investigated for blood disorders and different cancers, Louise was 9 and firstly was supposed to be Serenes bone marrow donnor.
When they started testing Louise they then found out she was also suffering from the same disorder. Investigations went on for 5 years; the years were full of hospital appointments, blood and platelets transfusions and many infections.
Doctors in Cardiff and Bristol were in contact with Genetic doctors in America. They found out that they both had Dyskeratosis Congenita; which is a genetic teleomere disorder, only 200 people in the world have it.
Serene and Louise spent time at the heath under Latch and TCT, Serene had her bonemarrow transplant in 2014 and Louise had hers in 2016. Serene always said our second home was the hospital which is true, for years they went back and forth but always seemed to try and have a reasonable good lifestyle considering the circumstances. Thanks to their mam Jeanette and dad Kevin the girls were always protected and kept them safe but also let them live.
Serene suffered with a lot of lung infections after her transplant, eventually causing her one side of her long to collapse but Serene still carried on, playing darts for the Cross, going out with friends and family plus a relationship which she never thought would be possible. Serene passed away in February 2018, the family were distraught and never saw this coming, the girls have always been ill but also so strong that this could not seem possible. Serene is missed dearly by her family and friends, she was such a strong character who did believe to live every moment like its her last.
After Louise's transplant she also had many issues due to infections and other complications. In 2017 Louise had Graft vs Host disease (gvhd) where she lost her skin, her hair for the second time and also the ability to walk.
Louise kept having many infections causing her alot of her life to stop and start however it's fair to say she always tries not to to let it stop her. She always will be a social butterfly. Loves to go out, party and just enjoy life.
August 2019 Louise applied for a job with the Welsh ambulance service in the contact center answering 999 calls, she loves this job and was something that suited her interest in people, care and aiding those in need. October 2019 Louise had a bonemarrow test which she has every year to check on her donor. Louise was also having this as she was suffering from many uncomfortable ulcers and infections, the test had gone wrong and caused Louise to have an infection in her bone, Louise still went back to work at this point but then fainted a couple of days later causing a hospital admission and more news. After xrays and scans louise found out she had necrosis of her hip, she was devastated as she could never play netball again plus at some stage may have to have a hip replacement, the necrosis was due to the steroids she was previously on for the gvhd, only 1% of people this affects, lucky right ??
Louise had to have time off work until January then started back once again, Louise met Scott inJanuary to, she never thought of falling in love and having a life with someone because life was so complicated but she finally let her guard down and wanted to start a life with him
Then pandemic happened where she had to sheild from March to August.
When Louise went back she was determined to get back and fighting fit she run 100 miles for TCT in August and going back to work loving her job everything seemed pretty great.
October 2020 once again infections start but something different, Louise has suffered with ulcers for two years causing her to be uncomfortable but it started to get worse where she couldn't walk due to the open wounds and as her immune system is not to good louise found herself going back and forth the doctors needing antibiotics and creams.
Louise found it hard as she had pain in her back and stomach, days were full of hot water bottles and pain killers, even though Louise is under many doctors nobody wanted to listen she even booked a private doctor as something wasn't right.
After many months of pain and upset Louise was admitted to the heath thinking it may have been herpes simplex causing pain on her spine. However the mri and ct scans showed that it was cancer.
Louise has now recently been diagnosed with bladder and lymph nodes secondary cancer, she currently under the drs in Velindre which have looked after her so well, first protocol was chemotherapy but the chemo is causing Louise's platelets to drop and is at risk of a stroke.
Louise is now going to start immunotherapy within the next few weeks and there may be other alternatives on the way to. So we are hoping we can help Louise and Her family as much as possible, in any way we can ❤️
Co-organizers (3)
Nadine Thomas
Organizer
Wales
Louise Thomas
Beneficiary
Becky Sykes
Co-organizer
Ffion Carter
Co-organizer