Alfie is five years old and lives with his family in Lincoln. He has Fragile X syndrome. Mum Kimberly explains: “It’s a genetic condition that causes learning disabilities, speech problems, low muscle tone, behavioural issues and autism. Alfie is the youngest of three boys and he’s the only one who inherited the condition.”

Kimberly was unaware that she carried the gene and it wasn’t until Alfie began missing the normal milestones – rolling, sitting, walking, and talking – that she noticed. “After several appointments and blood tests, Alife was diagnosed.”

Daily life for Alfie

“Alfie has a lively personality and loves to make people laugh. He wakes up before his brothers every day and likes to wave to the builder who lives across the road as he goes to work. He shouts ‘good bye’ to the cement mixer!’

Spending time outside is one of Alfie’s favourite things. ‘He likes to water the plants and ride his bike up and down the garden. If Alfie isn’t outside he can often be found in the bathroom transferring water from various containers. He’s fascinated with water and can play with it for long periods of time before realising he’s soaking wet.”

“Alfie likes a strong routine. He has a visual timetable at home and at school. He follows his routine very strictly at bedtime, and only I can do the bedtime routine. He checks his curtains to make sure they’re just right, he closes all the upstairs doors, he picks the same book to hold (The Gruffalo) and while I read the bedtime story, he asks about tomorrow, what might happen. Once he’s satisfied with the answer, it’s time to sleep.”

Challenges for Alfie

“Alfie is a very happy boy at home but going out to busy and loud places over-stimulates him. He can generally only manage about 45 minutes somewhere before it becomes too much.”

School has also been a big challenge for Alfie. “He struggles with changes to his routine – the hall being set-up for school photographs, or being taken over for school plays. Then there’s the noise of the other children and their movements.”

Kimberly tells us that Alfie has one to one support to help him with his challenges. “He had only just started to attend school for full days before the emergence of Coronavirus. It was a very long process to try and get him to school for full days, so we’ll probably have to start again, only going into school for short periods of time from September.”

The family are currently in the process of trying to move Alfie to a specialist school that would be better suit his needs.

Impact of Alfie’s condition

“Alfie has hospital check-ups for his sight, due to his low muscle tone, as well as speech and language therapy."

Developmentally, Alfie is a couple of years behind where he should be.

A big achievement for Alfie during the Coronavirus lockdown was learning to recognise the numbers one to six. We’re very proud of his hard work!”

Kimberly explains that Alfie’s condition impacts on family life. “We can’t go out to eat as a family, and avoiding busy and loud places is key. We have to make sure we take Alfie’s ear defenders and his tablet to distract him when we go out. All big outings have to be planned and explained to him – pictures and videos on YouTube of where we’re going and what we’ll be doing.”

“It’s very stressful dealing with Alfie’s meltdowns in public and you’re often looking out for anything that could upset or startle him, such as a passing motorbike or a siren. Driving with Alfie in the car can be very stressful. He becomes restless and will kick the back of the seat. He likes to have the window down no matter what the weather is outside, and this can be frustrating when it’s cold or raining.”

How we’ve helped

Kimberly heard about Family Fund at a signposting event for families who have children with disabilities. “We didn’t apply at first, but I did follow Family Fund on Facebook. When Alfie’s second hand swing set was no longer safe to use, I filled out a form to apply for a new one.”

Alfie received his grant for a new swing set at the end of July.

How it’s made a difference

“Alfie loves being outside, so a safe place for him to play is an absolute must. He has low muscle tone from his Fragile X syndrome, so the ladder on the swing set is great for getting him to use all his muscles, building strength and confidence. He also plays alongside his older brothers and tries to copy what they do. Swinging back and forth on the swing calms him down and gives him the sensory input he craves.”

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