We raise funds to support children affected by genetic disorders.
There are around 6,000 genetic disorders.
It is estimated that one in 25 children is affected by a genetic disorder. 30,000 babies and children are newly diagnosed in the UK each year.
Some genetic disorders are apparent at birth while others are diagnosed at different stages throughout childhood, and sometimes into adolescence.
Please take a look below to learn more about the children we support and the difference your donations make.
Five-year-old Dominic has Ohtahara Syndrome, a rare genetic disorder which causes epilepsy. Dominic has complex needs: He is not able to move independently and can’t hold his head up. He can’t talk or communicate. He has an unsafe swallow and is ‘peg fed’ which means he receives nutrition through a tube in his abdomen. He has severe visual impairment and he has a catheter fitted. Many children with Dominic’s condition do not reach their tenth birthday.
Four year old Henry was born with the rare genetic condition, Diamond Blackfan Anaemia. His condition meant that he was unable to make his own red blood cells, which carry oxygen around the body and so he required blood transfusions every 3 – 4 weeks to keep him alive.
Ellie and Hayden's story
Ellie shares what it’s like to have a little brother like Hayden who has the genetic disorder Duchenne Muscular Dystrophy, a progressive and life-limiting muscular degenerative disease.
It is estimated that one in 25 children is affected by a genetic disorder. 30,000 babies and children are newly diagnosed in the UK each year. Meet just some of the amazing children who you can help when you support Jeans for Genes.
Francesca, aged 4, has Acrodysostosis. A rare genetic disorder which affects many parts of her body. She has skeletal problems, can’t walk any distance, is fed through a tube, has global developmental delay, hearing loss, serious neurological problems and has had brain surgery, plus suspected heart issues.
Cameron is 5 years old. He was born with the genetic disorder Norrie Disease. This means he is blind. He is also deaf in his right ear and may lose his hearing completely as he grows older. He has autism, learning difficulties and hasn’t learned to speak yet.
Freddie is 15 months old and has an extremely rare genetic disorder called Trichothiodystrophy (TTD) which affects one child in a million. He was born very prematurely at 28 weeks, weighing just 2lb 5oz. He has many complex health problems.
Faith, 11, has Kleefstra syndrome, a rare genetic disorder which means she has epilepsy, delayed physical and intellectual development. She will need lifelong support.
Ashley has Treacher Collins syndrome meaning he was born without a jaw, cheekbones and ears.
Tamilore has sickle cell anaemia and often experiences debilitating pain. His limited physical health has a knock on effect on his education, hobbies and acceptance by others.
A multi-sensory wonderland
Monies raised on Jeans for Genes Day funded Oily Cart, a theatre company, to visit special schools with a production that involved tactile and multi-sensory activities.
Specialist nursing care
Helen is the Clinical Nurse Specialist for chronic granulomatous disorder at Great Ormond Street Hospital. Her role is funded through monies raised on Jeans for Genes Day.