Latest news with #boneMarrowTransplant
The National
5 days ago
- General
- The National
Gaza boy's bone marrow transplant brings family together in UAE
Twelve-year-old Oday Jedba's rare immune disorder led to his evacuation from Gaza to the UAE, where a bone marrow transplant from his sister saved his life and reunited his family after months of separation.
Yahoo
27-05-2025
- Health
- Yahoo
'Only 60 people in the UK have our daughter's genetic condition'
The family of a three-year-old girl with one of the UK's rarest genetic conditions are faced with the prospect of relocating to another city in order to get treatment for her. Autumn, who lives near York, has Hyper-IgE syndrome, which affects her immune system and requires daily antibiotics. The toddler must spend six months at the Great North Children's Hospital in Newcastle from October, to receive a bone marrow transplant. She has been told that Father Christmas will deliver her presents in hospital, but knows that after the operation, she will no longer have to take daily medication. Doctors first noticed something was wrong when Autumn was born, as she had raised levels of white blood cells, indicating an infection. However, no infection could be found, and over the next 18 months, the family were "in and out of hospital with various different things", her father Matt says. It was only during a visit to Harrogate District Hospital when a consultant, Dr Alexandra Hardisty, mentioned she had previously seen a case of Hyperimmunoglobulin E (Hyper-IgE) syndrome. "It's needle in a haystack stuff - only 60 people in the UK have been diagnosed with this," Matt adds. Genetic testing confirmed the suspicions, but also found neither of Autumn's parents carried the gene. "It's a genetic mutation," her mother, Louise, explains. "It's like a spelling mistake in her genes and it just means that her immune system – although it produces white blood cells so they can go fight the infection - they don't actually know where they're going. "So they just run around her body and they might stumble upon it, but she needs extra help to get rid of infections." According to the charity Immunodeficiency UK, common features are "severe eczema, increased susceptibility to infections and markedly raised levels of immunoglobulin E (IgE)". Autumn's treatment will involve eight days of chemotherapy to destroy existing cells, before they are replaced through a bone marrow transplant from a donor in Germany. After the eight days she will have "no immune system whatsoever", Matt says, meaning there are strict rules to control any infection risk. Autumn will spend three months in an isolation room with a carefully-controlled oxygen level, with only one of her parents allowed to sleep there at a time. Every time they enter, they will need to scrub down and discard any outdoor coats or clothes. Autumn's pyjamas and teddy, Mrs Pink Bunny, will have to be washed every morning, she will use a new toothbrush every day, and can only eat food provided by the hospital. "There's a period of time when there's a line in the room and she's not even allowed over the line in the room," Matt adds. "The hospital say that they expect her to be a bit more resilient than we would even be, because of her age." Meanwhile, they will "press pause" on family life, Louise says, as she prepares to temporarily close her yoga and personal training business. The hospital provides accommodation for whichever parent is not sleeping on the ward, but she says they will be "very much passing ships". The family has already visited the team of medics in Newcastle and "completed the hospital", Matt says. After visits to "dentistry, CT scans, X rays, the play team, consultants, research teams, professors", he says all three family members had a blood test. Autumn says she went first to show her parents how "easy" it was: "I got a sticker - I was very brave." Louise says: "You think, 'how are we going to do this?', but you just do, because it's going to prolong her life and she'll come out of this process with a completely new immune system." Matt adds: "We had moments when we're like: 'Remember when you were a kid and you'd see those families on GMTV with poorly children trying to go to Disney?' We're now that family. That's now us." They have received support from a charity, helping families of children receiving stem cell transplants at the hospital in Newcastle. The Bubble Foundation funds research and toys for the ward, as well as providing advice and reducing the financial burden for families. "You want to be able to concentrate on the matter in hand," Matt says. While he is able to continue working remotely during the move, he knows some others "lose their jobs because companies can't afford to keep paying them, so the Bubble Foundation help with a lot of that". Before the treatment takes place in October, Louise and Matt are completing a number of fundraising challenges, including a fell run and triathlon event. They are also inviting others to take part in charity days at two gyms, in York and Boroughbridge. "The objective is to raise awareness and the driver is a bit of a coping mechanism and distraction," Matt says. Louise jokes: "I think going into hospital in Newcastle for six months is a challenge enough, but I got signed up for it, so let's do it!" Listen to highlights from North Yorkshire on BBC Sounds, catch up with the latest episode of Look North. Boy, 5, saved by stem cell transplant Woman appeals for stem cell donor to save her life 'It was so easy to give people more years of life' Immunodeficiency UK The Bubble Foundation
BBC News
27-05-2025
- Health
- BBC News
York girl has 'one in a million' genetic condition
The family of a three-year-old girl with one of the UK's rarest genetic conditions are faced with the prospect of relocating to another city in order to get treatment for her. Autumn, who lives near York, has Hyper-IgE syndrome, which affects her immune system and requires daily toddler must spend six months at the Great North Children's Hospital in Newcastle from October, to receive a bone marrow has been told that Father Christmas will deliver her presents in hospital, but knows that after the operation, she will no longer have to take daily medication. Doctors first noticed something was wrong when Autumn was born, as she had raised levels of white blood cells, indicating an no infection could be found, and over the next 18 months, the family were "in and out of hospital with various different things", her father Matt was only during a visit to Harrogate District Hospital when a consultant, Dr Alexandra Hardisty, mentioned she had previously seen a case of Hyperimmunoglobulin E (Hyper-IgE) syndrome."It's needle in a haystack stuff - only 60 people in the UK have been diagnosed with this," Matt adds. Genetic testing confirmed the suspicions, but also found neither of Autumn's parents carried the gene."It's a genetic mutation," her mother, Louise, explains."It's like a spelling mistake in her genes and it just means that her immune system – although it produces white blood cells so they can go fight the infection - they don't actually know where they're going."So they just run around her body and they might stumble upon it, but she needs extra help to get rid of infections."According to the charity Immunodeficiency UK, common features are "severe eczema, increased susceptibility to infections and markedly raised levels of immunoglobulin E (IgE)". Isolation period Autumn's treatment will involve eight days of chemotherapy to destroy existing cells, before they are replaced through a bone marrow transplant from a donor in the eight days she will have "no immune system whatsoever", Matt says, meaning there are strict rules to control any infection will spend three months in an isolation room with a carefully-controlled oxygen level, with only one of her parents allowed to sleep there at a time they enter, they will need to scrub down and discard any outdoor coats or pyjamas and teddy, Mrs Pink Bunny, will have to be washed every morning, she will use a new toothbrush every day, and can only eat food provided by the hospital. "There's a period of time when there's a line in the room and she's not even allowed over the line in the room," Matt adds."The hospital say that they expect her to be a bit more resilient than we would even be, because of her age."Meanwhile, they will "press pause" on family life, Louise says, as she prepares to temporarily close her yoga and personal training hospital provides accommodation for whichever parent is not sleeping on the ward, but she says they will be "very much passing ships". The family has already visited the team of medics in Newcastle and "completed the hospital", Matt visits to "dentistry, CT scans, X rays, the play team, consultants, research teams, professors", he says all three family members had a blood says she went first to show her parents how "easy" it was: "I got a sticker - I was very brave."Louise says: "You think, 'how are we going to do this?', but you just do, because it's going to prolong her life and she'll come out of this process with a completely new immune system." Matt adds: "We had moments when we're like: 'Remember when you were a kid and you'd see those families on GMTV with poorly children trying to go to Disney?' We're now that family. That's now us." They have received support from a charity, helping families of children receiving stem cell transplants at the hospital in Bubble Foundation funds research and toys for the ward, as well as providing advice and reducing the financial burden for families."You want to be able to concentrate on the matter in hand," Matt he is able to continue working remotely during the move, he knows some others "lose their jobs because companies can't afford to keep paying them, so the Bubble Foundation help with a lot of that".Before the treatment takes place in October, Louise and Matt are completing a number of fundraising challenges, including a fell run and triathlon are also inviting others to take part in charity days at two gyms, in York and Boroughbridge."The objective is to raise awareness and the driver is a bit of a coping mechanism and distraction," Matt jokes: "I think going into hospital in Newcastle for six months is a challenge enough, but I got signed up for it, so let's do it!" Listen to highlights from North Yorkshire on BBC Sounds, catch up with the latest episode of Look North.
The National
14-05-2025
- Health
- The National
Gaza child receives life-saving transplant in Abu Dhabi
A child with a rare and severe immunodeficiency has undergone life-saving treatment in Abu Dhabi's Yas Clinic in Khalifa City. The bone marrow transplant, conducted under the supervision of the Abu Dhabi Stem Cells Centre, came after the child had been admitted for seven months diagnosed with DADA-2 deficiency, state news agency Wam reported. This is a rare genetic disorder that involves inflammation of the body's tissues, especially the tissues that make up the blood vessels. It can lead to damaged vital organs and systems, resulting in disability and even death. After admission, the boy required prolonged care in Yas Clinic's paediatric intensive care unit due to the complexity of his condition. Family support To save his life, and with the UAE's support, his sister was able to travel from Gaza to serve as his matched donor in a transplant performed last month. He has since been discharged and is in a stable condition, Wam added. 'This was an extraordinary case that brought together every element of modern medicine, from genetics and immunology to critical care and transplantation,' said Dr Maysoon Al Karam, chief medical officer at Yas Clinic Khalifa City. 'The commitment shown by our multidisciplinary team and our partners at ADSCC made all the difference in this child's life.' The patient has now returned home to continue his recovery. UAE delivers The operation is one of many examples of how the UAE has supported the people of Gaza since war broke out in the enclave. Launched in 2023 by President Sheikh Mohamed, Operation Gallant Knight 3 has been carried out in collaboration with the Emirates Red Crescent and humanitarian and charitable institutions in the UAE, to deliver aid to those most in need. More than 55,000 tonnes of aid has been delivered through air, and across sea and land, with more than 500 air trips, six transport ships and 2,500 lorries used to carry goods from Egypt into Gaza. Additionally, an air drop operation has delivered more than 3,700 tonnes of humanitarian aid by parachute in inaccessible areas.
