My summertime story – Jennifer

Jennifer and Jamie’s daughter Cleo is seven. Cleo has been diagnosed with a rare genetic disorder called Weidemann-Steiner syndrome, which causes hypermobility, hypotonia, and global developmental delay.

We caught up with Jennifer after their family holiday to France, to hear how summer is for her family.

Tell us about your summer

“We have been to France this past week. We drove the long 12 hour journey through the night due to the challenges at the airport with Cleo.

“Our biggest challenge in the summer is Cleo’s anxieties, holidays need to be perfectly planned as any rushing/panic causes meltdowns. We have a camper at home, which would have been Cleo’s ideal holiday as she feels safe in that but it is an old one and fuel would have been extortionate, so a static caravan on a site was the next best thing. We had no air conditioning in the car or the caravan, which was hard as the heat has hit highs of 30 degrees most days! Thank you to Family Fund for the iPad which is very helpful on these long journeys.”

“Picnics, convenience foods and takeaways has been our diet. We did attempt a supermarket but spending more than 10 minutes in there was impossible as it’s so big and noisy. Cleo is luckily small enough to still just fit in a trolley. She wears ear defenders and her blanket over her head to help her cope.”

Additional costs

“Cleo struggles to walk far due to her hypermobility, which causes pain so we usually carry her or put her on our shoulders. We have a pull wagon for her and her equipment which helps, but even that gets heavy and difficult in busy areas. We have applied for referral to occupational therapy for a pushchair for her, but this could take months. The pull wagon cost of over £100.”

“On holiday, we went to Disneyland. The staff there are amazing at dealing with children and recognising children with hidden disabilities. But it was very overwhelming for Cleo as it was so busy. We got an access pass for us to use the exits and shorter lines for attractions which definitely helped.

“Cleo’s eating habits are difficult when we’re away too, she struggles with chronic constipation and takes daily medication. There will be days she will hardly eat but then days she will eat so much and binge eat. If we’re out and about, she’ll often want specific food we have to buy but 90% of the time we know she won’t eat it. We have to be really good at planning ahead and be organised to help save money.

“Cleos favourite thing to do on holiday was go to the beach area, she loved playing in the sand. Even though she loved it there, after an incident on the second day where another child had to be helped by the emergency services, she struggled with massive anxiety. Having a child with additional needs, emotions are heightened for the whole family.”

“Unless you have a child with additional needs you can just never begin to understand the daily challenges.”

“Cleo is the most caring little girl you will ever meet. Every challenge is worth every second of her beautiful face in our lives, we feel so blessed every day.”