Lola & Frankie’s Story
Over the course of a month, Liferaft supports several campaigns through social media and our blog. As a result, we often come across stories that make us laugh, make us cry and sometimes, just make us stop and think. However, it is very rare to come across a story that does all three, so we wanted to share with you this inspiring story.
Lola has been fundraising for the National Autistic Society for the last 4 years as her uncle Frankie was diagnosed with Autism. With the help of ‘Team Lola’ led by her mum Holly, she has organised various events from baking, dressing up & wacky hair days. Lola has raised over £500 during this time which is amazing, but what is even more amazing is that Lola is 10 years old, which means she started fund raising when she was just 6!
Frankie is 19 and was diagnosed with autism when he was 3 years old. He attends Greenfields School in Merthyr Tydfil whose motto is ‘Opening Doors to the Future’ and will be transitioning at the end of the Summer term – a difficult time for all families where a child has additional needs. When Frankie was diagnosed, it was recognised that his autism was very severe, so from an early age it defined who he was and what he was able to do. As a result, his family had to adapt very early on and they continue to adapt as Frankie’s needs as an adult change.
Despite all of this, Frankie loves being outside in the fresh air, so his family have put together different activities that ensure Frankie gets out as much as possible. His favourite is his weekend respite trips to a local farm where he gets fully immersed in all the farming activities, including the mucking out! The wider family are involved in Frankie’s care to ensure that he is active and safe and that everyone gets a ‘time out’ – something that is incredibly important for everyone in Frankie’s circle of care and we’re sure will strike a chord for others who are in a similar position.
The first time that Lola decided to raise money for charity was at the hairdressers aged just 6 – when most little girls are longing for Rapunzel type hair, Lola decided to cut off 7 inches and donate it to the Little Princess Trust! The Trust make wigs for children with cancer out of donated real hair. She raised £122 and is considering doing it again later this year now that her hair has grown back!
Lola was aware that Frankie had autism from around 5 years of age and that he was different, however she has always been totally at ease with him and appreciates that he is ‘different not less’. She started baking to raise awareness and money, which then led on to Wacky Hair days that have been supported by Lola’s school! And in answer to the obvious question – YES – Lola’s hair remained held up by the balloons all day at school!
What Can We Do
When we asked Holly and Lola what more could be done to support individuals like Frankie and their families, they were very clear:
- More awareness and support need to be given to families where a young adult is going through transition
- More opportunities need to be given to adults with autism as they have so much to offer
- Learn how to communicate with people who have autism and treat them as individuals as they go about their daily lives; please don’t stare at people who are different to you
- We should be teaching children at primary and secondary schools about people with additional needs and that they are ‘different not less’ as this will raise awareness at an early age and reduce the amount of bullying that takes place
The National Autistic Society – http://www.autism.org.uk/
My family Your Needs – https://www.myfamilyourneeds.co.uk/
Little Princess Trust – http://www.littleprincesses.org.uk/
Liferaft Autism Resources – https://www.myliferaft.com/more/resources/#autistic-spectrum-including-autism-and-aspergers-syndrome
Liferaft was created by technology entrepreneur Nicola Murgatroyd. Her oldest daughter had complex special needs, and Nicola faced real problems managing her care effectively. “My personal experiences gave me a first-hand insight into the problems and challenges faced by parents in caring roles. I realised that gaps in knowledge between parents, carers, education and medical professionals became huge issues, and wished there was something I could use to hold everything we as a family knew in one place. Nothing can ever really prepare you for parenthood and caring for a child with additional needs carries extra challenges. However, there are ways to make life easier for everyone whatever their circumstances, and that’s what we have created with Liferaft – a tool which helps to manage all aspects of modern day living.”
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