Joy for girl (8) with rare condition given new lease of life

Lexi Smith, a pupil at Willoughby Academy School, in Bourne, has a neurological condition that has left her non-verbal. She is also unable to understand instructions and has autistic traits.

Mum Rebecca (26) said; “My daughter has some sensory issues and over the last six months she has quickly lost all interest in her usual toys.

“At home she began dropping everything and started to walk around in a circle not knowing what to do.

“She was becoming frustrated and bored and was finding it difficult to relax.”

Luckily Lexi’s Occupational Therapist at school showed Rebecca the multi-sensory equipment that they use at the Academy, and told her about the calming effect that it can have on children with a variety of neurological conditions.

“Lexi loves the schools 4D room,” exclaimed Rebecca. “They use projectors to bring the walls alive with things like firework displays, winter scenes, or anything that they are studying at school.

“They also project from the ceiling so that fish can be seen swimming across the floor whilst playing lots of different music.”

Realising that Lexi would benefit from her own sensory equipment at home Rebecca, and Lexi’s 26-year-old father Devan, looked at what specialist equipment would best suit their daughter’s needs.

“There was quite a lot to choose from,” explained Devan. “From projectors and bubble tubes to fibre optic lights and dark dens.

“In the end we thought that the tactile equipment pack would be best suited for Lexi as it contained a musical panel, a high power light board that included 192 LEDs, and an ultraviolet ripple mat that glows intensely under UV light.”

However, it soon became apparent that there would be a financial barrier to Rebecca and Devan buying the tactile equipment for Lexi. As Rebecca explained: “The pack that we wanted to buy cost an eye watering £963, which was way beyond the family’s budget.

“We’d resigned ourselves to being unable to buy the equipment, which was really sad because we knew our daughter would really enjoy it.”

But then a friend suggested contacting Caudwell Children to see if they could fund the pack.

Lexi received the equipment just before Christmas and Devan says it’s already had a positive impact on her life. As he explained: “The pack, which has a colourful and visually arresting panel, really captures her imagination.

“It’s full of tactile things that she can explore with her hands and everything glows brightly under a UV light.”

Rebecca says Lexi is no longer at a loss for something to do at home. As she enthused. “The pack has helped to stimulate her and it appears to calm her down, giving her something to focus on.

“She really enjoys running her fingers through the UV strings and she can stand with it for ages pressing the button at the top.

“She still enjoys her music, noisy books, and finding her own children’s cartoon channels on the iPad, but I think the tactile pack is becoming her favourite thing!

“Without Caudwell Children’s contribution we would never have been able to access this sort of equipment so thank you so much for helping to bring joy to a special little girl at Christmas.”

Mark Bushell, from Caudwell Children, is delighted that the charity could support Lexi. As he explained: “It’s fantastic when parents tell us that we’ve had such a positive impact on a child.

“Without Caudwell Children’s funding many parents would be unable to buy this equipment as it doesn’t come cheap.

“Tactile packs can’t be secured through statutory funding so it’s really important that the charity continues to fill this gap in provision.

“Each feature in the pack has been designed to engage children and hopefully it will continue to attract Lexi’s attention and enable her and the family to relax together.

“But we couldn’t do it without the support of the public and it’s only through their generous donations that we will be able to continue supporting other children like Lexi.”

To find out more about Caudwell Children and the services that they provide, or to make a donation, visit: www.caudwellchildren.com