A mum is hosting a special festival in memory of her son to mark 10 years since he died.
Krysti Gutherless, from Hull, was 37 when she welcomed her first child, Frankie Laws, into the world in April 2014. Frankie was a happy baby with thick auburn-coloured hair but sadly was diagnosed with a rare genetic condition not long after birth.
Frankie had spinal muscular atrophy (SMA) which is the most common genetic cause of death in infants, according to the Muscular Dystrophy Association. All the muscles in Frankie's body were affected and he passed away at just four and a half months old.
READ MORE:
- Hull riot: Man's terror as violent mob charges at his family and set cars on fire
- Keep up to date with all the latest breaking news and top stories from Hull with our free newsletter
Frankie Fest will have live music, children's activities, face-painting and a bouncy castle and is taking place at the Springhead Pub in Anlaby on Saturday, August 31 between 12pm and 8pm. The money will go towards SMA UK which provides emotional support for families affected by the disease as well as practical help such as wheelchairs and toys and information about treatments and clinical trials.
Remembering Frankie, Krysti said: "Everyone called him the Little Smiler because he was very cheeky and smiley. He was very clever, SMA does not affect behaviour or the brain or anything so he was bright and chattered a lot."
Explaining what the genetic condition is, Krysti said: "Frankie was born with it, we didn't know. It's quite rare. You can be a carrier of SMA and not actually be affected by the condition or if you've got SMA Type 1, which Frankie did, then it is life-limiting.
"We never knew anything about the condition. None of our families have been affected. There is about a one in 200,000 chance two people would get together and both be affected and go on to have a child affected.
"Frankie was four-and-a-half months old when we lost him. It's a muscle-wasting condition and his muscles just weren't forming properly and, obviously, your heart is your biggest muscle. Towards the end of his life he got a chest infection and that took a toll on his heart as well."
She added: "It was awful. It was a really, really dark time. But my family and friends are really good so we keep Frankie's memory alive. We keep talking about him and this for me is a way of making sure we do remember him and also raise awareness of the condition."
Frankie was Krysti's first baby but she now has two children. She also volunteers as a befriender for Sands, a charity that helps people suffering from grief after losing a child. They will also be attending Frankie Fest.
Hoping to raise awareness of the charities and support groups available, Krysti added: "If people have been affected by something similar they should definitely reach out and get support. It is very isolating.
"Especially when you are around other parents who have gone through something similar, it is comforting to be with people who understand you."
To find out more or donate, you can visit the GoFundMe page Krysti has set up for Spinal Muscular Atrophy UK. Krysti is also asking local businesses to get in touch if they donate prizes for the raffle and tombola at Frankie Fest.
