Madison Horn’s legacy lives on through her family and charity work
Madison Horn was only 22 months old when she lost her battle with a rare and aggressive form of cancer in April 2023. Her dad Kevin Horn, 36, from Kelty, Fife, said he was devastated by the loss of his “beautiful and bubbly” daughter, who had been diagnosed with atypical teratoid rhabdoid tumour (ATRT) just two months earlier.
Kevin said he and his partner Ashley Glass, 31, had noticed Madison was not her usual self in February 2023, when she started vomiting and having seizures. They took her to the hospital, where a scan revealed a large tumour in her brain.
Madison underwent surgery to remove the tumour, but the doctors told her parents that it was a very rare and aggressive type of cancer, with a survival rate of less than 10 per cent. She was given chemotherapy and radiotherapy, but the cancer spread to her spine and other parts of her body.
Kevin said he and Ashley tried to make the most of the time they had left with Madison, who loved Peppa Pig, Frozen and dancing. They took her to Disneyland Paris, where she met her favourite characters, and organised a princess-themed party for her second birthday.
He said: “She was such a happy and lively girl, always smiling and laughing. She loved music and dancing, she would always get up and dance whenever she heard a song. She was so brave and strong, she never gave up. She was our little princess and we miss her so much.”
Kevin said he wanted to raise awareness of ATRT and other rare childhood cancers, and to support other families going through the same ordeal. He set up a fundraising page in Madison’s memory, which has raised more than £20,000 for various charities, including CLIC Sargent, CHAS and the Brain Tumour Charity.
He said: “We are so grateful for all the support we received from the charities, the hospital staff and the community. They helped us cope with the hardest time of our lives. We want to give something back and help other families who are facing this nightmare. We also want to honour Madison’s legacy and keep her memory alive.”
Rare cancer affects only three children in the UK each year
ATRT is a very rare type of brain tumour that mostly affects children under three years old. It is estimated that only three children in the UK are diagnosed with ATRT each year.
ATRT stands for atypical teratoid rhabdoid tumour, which means it is a tumour that has both atypical (abnormal) and rhabdoid (resembling a rhabdomyosarcoma, a type of muscle cancer) cells. It can grow anywhere in the central nervous system, including the brain and the spine.
The cause of ATRT is not known, but it is linked to a genetic mutation in a gene called SMARCB1, which normally helps control cell growth and division. This mutation can be inherited from a parent or occur randomly in the child’s cells.
The symptoms of ATRT vary depending on the location and size of the tumour, but they may include:
- Headaches
- Nausea and vomiting
- Seizures
- Vision problems
- Balance and coordination problems
- Behavioural changes
- Developmental delays
The diagnosis of ATRT is based on a combination of imaging tests, such as MRI or CT scans, and a biopsy, which is a sample of the tumour tissue taken for analysis. The treatment of ATRT usually involves surgery to remove as much of the tumour as possible, followed by chemotherapy and radiotherapy to kill any remaining cancer cells.
The prognosis of ATRT is poor, as the tumour tends to grow quickly and spread to other parts of the body. The survival rate for children with ATRT is less than 10 per cent, and most children die within a year of diagnosis.
There is currently no cure for ATRT, but research is ongoing to find new and better ways to treat this rare and aggressive cancer. Some of the areas of research include:
- Developing new drugs that target the specific genetic mutation of ATRT
- Testing new combinations of chemotherapy and radiotherapy
- Exploring the role of immunotherapy, which uses the body’s own immune system to fight cancer
- Improving the quality of life and palliative care for children with ATRT and their families
Parents urged to cherish every moment with their children
Kevin said he wanted to share his story to raise awareness of ATRT and other rare childhood cancers, and to urge other parents to cherish every moment with their children.
He said: “We had no idea what ATRT was until Madison was diagnosed with it. It was a shock to learn that it was so rare and so deadly. We felt helpless and hopeless. We did everything we could to save her, but it was not enough. She was taken from us too soon.”
He said he and Ashley were trying to cope with their grief, and to support their other children, Kian, 13, and Kayla, 10, who also miss their little sister dearly. He said they were planning to do something special for Madison’s third birthday in May, such as releasing balloons or planting a tree in her honour.
He said: “We are still in pain, but we are also proud of Madison and what she achieved in her short life. She touched so many hearts and inspired so many people. She was a fighter and a star. She will always be with us in our thoughts and our hearts.”
He said he hoped his story would encourage other parents to appreciate every moment with their children, and to not take anything for granted. He said: “You never know what life will throw at you. You never know when it will be the last time you see your child smile or hear them laugh. Cherish every moment with them, because they are precious and priceless. Don’t let the small things bother you, focus on the big things that matter. Love them with all your heart, because they are the best thing that ever happened to you.”
