Latest news with #AmeliaBeckett
ITV News
01-06-2025
- ITV News
Friends and family gather for charity football match in memory of 20-year-old Mackenzie Ball
Video report by Amelia Beckett The family and friends of a man from Rotherham who was killed in a car crash last year have held a charity football match in his memory. Mackenzie Ball was 20 years old when he died in a car crash - police believe he was deliberately rammed off the road. Despite a number of arrests following the crash on June 2 no-one has been charged with Mackenzie's death - his family now hope that my honouring him with the charity football match, his legacy will live on. Dozens gathered as a tribute to him at today's match - the result didn't matter, it was about getting the community together and raising money for both ADHD and Autism charities. Mackenzie was diagnosed with both. His sister Ellie paid tribute to the brother she says had a 'heart of gold'. 'He was just absolutely amazing, so hard working so get up and go, life and soul of the party, heart of gold, do anything for anybody its just absolutely heartbreaking and such a shame that this has ended up happening." Friend Leo Welch said:" Mackannzie had ADHD and Autism and his mum came up with that idea - and Ive got ADHD myself so I thought it was a brilliant idea, put some more support in the community and obviously help a local charity." Drew Lindley added: "We want to keep it going this is only the first year of doing it we'll do it bigger and bigger every year." So the plan is expand next years event - MacFest - with music, bands and stalls to keep alive the memory of a young man with such a lot to live for.
ITV News
07-05-2025
- Health
- ITV News
Scunthorpe mum discovers child had Hurler Syndrome after Googling 'bushy eyebrows'
Video report by Amelia Beckett. A mother who discovered her daughter had a rare genetic disorder after googling "bushy eyebrows" is calling for routine screening for the condition. Pamela Ives says she began searching online for facial features similar to those of her daughter, Sophia, after she began to lose physical similarities with her and her husband. She said: "From around six months, I knew there was something not right with her because she wasn't able to do tummy time, she had low muscle tone, and she was sensitive to light. "I happened to Google bushy eyebrows and then MPS (Mucopolysaccharidosis) came up. "[Google] said there's a one in 100,000 chance of your child having this syndrome. But I just knew that she had it from that point. "When I told my husband he thought I was going crazy. He said the condition is so so rare and there's no chance our daughter could have that." What is Hurler Syndrome? Mucopolysaccharidosis (MPS 1), also known as Hurler Syndrome, is a rare disorder where the body lacks an enzyme needed to break down complex sugar molecules. It causes the molecules to accumulate and when there's too much toxic buildup in cells they die or don't function properly. Children with Hurler Syndrome are usually not born with signs but develop symptoms during the first year of life. Symptoms include an enlarged head with prominent frontal bones, protruding eyes, enlarged lips and wide-open eyes. Children with this condition can also have heart valve problems, hearing loss, vision problems and respiratory issues. If Hurler Syndrome is not treated early it can be fatal. Developmental delay can become apparent by the age of 1 to 2 years and children with the condition have an average life expectancy of 5 years. Pamela added: "It wasn't until 14 months that we actually got the official diagnosis. "Personally I feel angry that it took until 14 months for her to get her diagnosis of MPS. "I want to raise awareness and I'm quite passionate about the UK changing it so they are tested on the new born screening. "I do know that some countries do test on the new born screening but unfortunately the UK isn't one of them." The Government previously said it does not recommend newborn screening for the condition. Treatment for Hurler Syndrome usually involves a bone marrow transplant before the age of two, for which a match is needed. But Sophia has been selected as one of 40 children worldwide for an experimental gene replacement therapy trial. It involves her own genes being sent to Milan where they will be modified and sent back to the UK to be implanted back into Sophia's body at Manchester Children's Hospital. Prof Robert Wynn: "Because she is her own donor it's actually a much safer transplant than using another person where we have to use drugs that immunosuppress and stop complications. "What I'm seeing after 25 years of looking after kids with hurler syndrome having transplants is a transformation of results." Sophia will also have to undergo chemotherapy which is required to weaken her immune system significantly.
