Heidi-Lou urgently needs a more inclusive wheelchair

Written by Lexi Heselwood on 12th January 2022

The mum of a nine-year-old girl from Salford has launched an appeal to help her disabled daughter get an inclusive wheelchair, which would be life-changing for the youngster.

Heidi-Lou Decieco – who her mum describes as a “bright and bubbly little girl, who’s always smiling” – suffered a foetal haemorrhage resulting in cerebral palsy. She is also profoundly deaf and has epilepsy.

The nine-year-old is currently excluded from many activities and occasions due to her cumbersome and uncomfortable buggy.

Children Today has pledged a significant sum towards the cost of the wheelchair but the family still needs to raise £1,905 to help Heidi-Lou get the equipment she so desperately needs.

 

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Heidi-Lou’s mum, Kate Decieco, explains:

“This new wheelchair would have a huge impact on Heidi-Lou’s quality of life. The wheelchair provided by wheelchair services simply doesn’t meet her needs, so at the moment she’s in a buggy, which is really bulky and heavy. This means she’s often excluded from being able to fully join in at mealtimes with the rest of the family or playing with her friends at school. I also find it really difficult to push her very far in it, especially in the bad weather when it gets muddy.

Heidi-Lou desperately needs a new compact wheelchair

Mum Kate, describes Heidi-Lou as a “bright and bubbly little girl, who’s always smiling”

“Heidi-Lou is so desperate to be more independent. I think she’s convinced she’s more capable than she really is sometimes! We recently went ice-skating and it was apparent afterwards that she thought she’d be able to whizz around the ice-rink on her feet like the other children, instead of being pushed along in her buggy. We try to make things like this feel as inclusive as possible, so she had ice skates on, but in the buggy her feet can’t touch the ground and she really wanted to be able to push along one of the little penguins or seals but she couldn’t reach it in the buggy! She was so disappointed.

Heidi-Lou with mum Kate and three-year-old brother, Roux, on a recent ice-skating trip

Heidi-Lou with mum Kate and three-year-old brother, Roux, on a recent ice-skating trip

“I feel I owe it to Heidi-Lou to help her be as independent as she possibly can and encourage her determination. She is capable of transferring into a standing position, but not from her buggy, which means she has to be hoisted in and out of it at school and she gets really upset that she isn’t given the opportunity to even try. This new wheelchair would change all that, and as it’s more compact she’ll feel much more included. She’ll be on the same level to interact with her peers and friends in the playground and in lessons.”

Single-mum Kate is keen to secure the equipment in time to help Heidi-Lou’s rehabilitation, as she is due to undergo major surgery to reduce her muscle stiffness.

The operation Selective Dorzal Rhizotomy (SDR), which the family has had to self-fund, involves cutting the nerves in her spine that are causing the most tension to reduce spasticity. Heidi-Lou also underwent a double hip operation in 2021.  

Kate continues:

“It would be amazing if we could get this wheelchair in time for when she’s had the SDR surgery as it would mean she can start learning how to manage her movement correctly straight away, rather than have to re-learn when the new chair arrives.  

“It’s been such a battle trying to get the right equipment and support for Heidi-Lou. There’s a four-month waiting list just to be seen by the NHS wheelchair services team and no guarantee that they will support our application for this light-weight, more compact wheelchair. They tend to focus on whether the equipment provides the right postural support, but don’t necessarily take into account the social side of things and how that impacts her mood and mental wellbeing.

“Although she’s behind in her development for her age, Heidi-Lou’s communication and understanding is very good and improving all the time. She’s really funny and in spite of her challenges, is the absolute boss of both her older brother and baby brother. But they wouldn’t have it any other way, they adore her. She brings so much joy to our family and we just want to be able to give her as much happiness as she gives us.”

Heidi-Lou is very close to her older brother Mackenzie

Heidi-Lou is very close to her older brother Mackenzie

Children Today Charitable Trust has helped the family launch a fundraising appeal to help raise the remaining £1,905 needed to help Heidi-Lou get this vital equipment.

Emma Prescott, charity director at Children Today Charitable Trust, adds:

“Heidi-Lou is clearly a very determined young lady and it’s heart-breaking to see her being held back by not having a suitable wheelchair.

“Sadly, so many children like Heidi-Lou don’t have access to the right equipment to be able to live an inclusive and independent lifestyle. You really can’t underestimate the impact that feeling more included and having the autonomy to do as much for herself as possible will have on Heidi-Lou.

“Her condition means she faces daily challenges, which makes it all the more important that she’s given every opportunity to learn and develop, physically, socially and emotionally. We hope that we’re able inspire the community to help this remarkable little girl be the best she can be.” 

To make a donation to help fund Heidi-Lou’s life-changing wheelchair visit her online fundraising page

 

Any funds raised over and above what is needed to provide this equipment will go towards helping fund vitally important equipment for other vulnerable children and young people living with a disability.