Noah’s legacy helps to save lives
Noah Tesselaar was a happy, healthy child and in his first year of primary school when, out of the blue, he was diagnosed with a rare form of leukaemia. This type of leukaemia (acute lymphoblastic leukaemia Philadelphia Chromosome positive), which is more common in adults, is considered a higher risk blood cancer because the likelihood of achieving remission is 60 to 70%.
Despite a courageous fight, during treatment, Noah’s immune system was too weak to fight off an infection and he died of an invasive fungal infection, Mucormycosis, in June 2020.
In July 2021, Noah’s parents founded Noah’s Pink Balloon Leukaemia Fund with a focus on medical research to help alleviate the suffering of other children and their families. The charity supports the underfunded areas of leukaemia research to help clinicians improve the early diagnosis and treatment of fungal infections and advance treatment options for leukaemia.
In 2022 Noah’s Pink Balloon Leukaemia Fund funded the Noah’s Pink Balloon Fellowship, based at the University of Exeter’s MRC Centre for Medical Mycology. This Fellowship, under supervision of Professor Adilia Warris and Dr Liz Ballou, will research Mucormycosis, a complication that occurs in patients undergoing chemotherapy for leukaemia, or in those with a weak immune system. It is the second most common mould infection in patients with cancer leading to excessive destruction of organs, blood vessels and has extremely high mortality rates. The World Health Organisations has recently designated fungi causing mucormycosis as ‘high priority pathogens’ needing urgent attention.
“Research is what Noah’s Pink Balloon Leukaemia Fund is all about and is the key to preventing what happened to Noah happening to others in the future.”
The researcher appointed to the Fellowship post is Alyssa Hudson, a registrar in medical microbiology at the Royal Devon and Exeter Hospital. She says: “Mucormycosis is incredibly difficult to diagnose, particularly at an early stage when it is most treatable. It is caused by fungi that are all around us in the environment – we will frequently be breathing in their spores and coming into contact with these fungi. In healthy people this is not a problem, but in those with a weakened immune system it can cause an invasive infection that the body cannot fight. Patients with cancer or who have had an organ transplant are particularly vulnerable.
“Mucormycosis can be treated with anti-fungal drugs but there are limited options and unfortunately because it is so difficult to diagnose, treatment is often started too late to be successful. For this reason, around 80% of people with this infection will die.”
The Fellowship aims to improve this prognosis by researching how to diagnose the fungal infection earlier, so it can be treated in time. Currently cases are diagnosed with a tissue sample, but this is invasive and requires a small operation. Professor Chris Thornton, Professor of Fungal Immunology at the University of Exeter has developed a rapid blood test for detecting the fungus Rhizopus arrhizus, a main cause of mucormycosis. Alyssa’s research will build on his work by looking at how this might translate in infected patients and increase understanding of how the fungus changes during infection.
She says: “Having access to a test like this will enable doctors to diagnose patients as soon as there is suspicion of infection, allowing appropriate treatment to start earlier and thereby reducing the mortality rate.”
Susan Tesselaar, Noah’s mother and Chair of Noah’s Pink Balloon Leukaemia Fund, says: “We are delighted to have appointed Alyssa as Noah’s Fellow and look forward to seeing the impact of the research.
“A test like this could make all the difference as doctors treating Noah were unable to identify that Mucormycosis had taken hold until after his death. Research is what Noah’s Pink Balloon is all about and is the key to preventing what happened to Noah happening to others in the future. I would like to thank the University of Exeter’s MRC Centre for Medical Mycology for partnering with us and we look forward to working together in a bid to bring urgent attention to invasive fungal infections and subsequently saving lives.”
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Noah Tesselaar was a happy, healthy child and in his first year of primary school when, out of the blue, he was diagnosed with a rare form of leukaemia. This type of leukaemia (acute lymphoblastic leukaemia Philadelphia Chromosome positive), which is more common in adults, is considered a higher risk blood cancer because the likelihood of achieving remission is 60 to 70%.
Despite a courageous fight, during treatment, Noah’s immune system was too weak to fight off an infection and he died of an invasive fungal infection, Mucormycosis, in June 2020.
In July 2021, Noah’s parents founded Noah’s Pink Balloon Leukaemia Fund with a focus on medical research to help alleviate the suffering of other children and their families. The charity supports the underfunded areas of leukaemia research to help clinicians improve the early diagnosis and treatment of fungal infections and advance treatment options for leukaemia.
In 2022 Noah’s Pink Balloon Leukaemia Fund funded the Noah’s Pink Balloon Fellowship, based at the University of Exeter’s MRC Centre for Medical Mycology. This Fellowship, under supervision of Professor Adilia Warris and Dr Liz Ballou, will research Mucormycosis, a complication that occurs in patients undergoing chemotherapy for leukaemia, or in those with a weak immune system. It is the second most common mould infection in patients with cancer leading to excessive destruction of organs, blood vessels and has extremely high mortality rates. The World Health Organisations has recently designated fungi causing mucormycosis as ‘high priority pathogens’ needing urgent attention.
‟Research is what Noah’s Pink Balloon Leukaemia Fund is all about and is the key to preventing what happened to Noah happening to others in the future.”
“Mucormycosis can be treated with anti-fungal drugs but there are limited options and unfortunately because it is so difficult to diagnose, treatment is often started too late to be successful. For this reason, around 80% of people with this infection will die.”
The Fellowship aims to improve this prognosis by researching how to diagnose the fungal infection earlier, so it can be treated in time. Currently cases are diagnosed with a tissue sample, but this is invasive and requires a small operation. Professor Chris Thornton, Professor of Fungal Immunology at the University of Exeter has developed a rapid blood test for detecting the fungus Rhizopus arrhizus, a main cause of mucormycosis. Alyssa’s research will build on his work by looking at how this might translate in infected patients and increase understanding of how the fungus changes during infection.
She says: “Having access to a test like this will enable doctors to diagnose patients as soon as there is suspicion of infection, allowing appropriate treatment to start earlier and thereby reducing the mortality rate.”
Susan Tesselaar, Noah’s mother and Chair of Noah’s Pink Balloon Leukaemia Fund, says: “We are delighted to have appointed Alyssa as Noah’s Fellow and look forward to seeing the impact of the research.
“A test like this could make all the difference as doctors treating Noah were unable to identify that Mucormycosis had taken hold until after his death. Research is what Noah’s Pink Balloon is all about and is the key to preventing what happened to Noah happening to others in the future. I would like to thank the University of Exeter’s MRC Centre for Medical Mycology for partnering with us and we look forward to working together in a bid to bring urgent attention to invasive fungal infections and subsequently saving lives.”