Napton family fundraising to buy specialist sensory equipment for their nine-year-old daughter with complex medical conditions

The Parsons family are fundraising for sensory equipment such as bubble walls to help create a better environment for Amelia when she is at home.

Amelia’s mum, Jo, said: "Amelia has Digeorge Syndrome or it is sometimes called 22q, which is a deletion of part of your 22nd chromosome.

"It’s almost as common as Down Syndrome but no one has ever heard of it.

"You can have up to 180 different medical conditions but it just depends on the individual.

"Amelia is blind, has Cardiac TOF and PA, Polymicrogyria, Epilepsy, Thrombocytopenia, liver impairment, her leg has set in a bent position so she cannot walk and is a wheelchair user.

“She also has Autism, Sensory Processing Disorder, anxiety, she is gastrostomy fed and has spent a lot of time in hospitals Warwick and Birmingham Children’s Hospital, which hasn’t helped her anxiety.

“She has had many operations on her heart, eyes and leg.”

The Parsons family are working on sorting sensory equipment for Amelia as she can get frustrated at home as she is limited to activities.

They are aiming to provide an environment for her that can also help regulate her emotions.

Jo said: “We have been looking at bubble walls. All bubble tubes have now been taken out of sensory rooms and replaced with light tubes due to infection control, which means Amelia cannot access most sensory rooms.

"Due to her being blind and having Autism she hates unpredictable sounds, so interactive floor mats are a no go.

“We just want to create a little area for her at home, with a bubble wall, beanbag, swing and so on.

“We want her to have an area where she can regulate herself. Being blind is hard, having Autism is hard – having the two together, plus all her medical conditions is a lot for her to deal with on a daily basis.

"Her anxiety has increased as she has got older and she struggles to get out of the house other than to go to school.

"She struggled to even go to school for nine months because her anxiety was that bad, even though it’s her favourite place to be.

"So we want her to have access to sensory equipment that will help her."

The family are hoping to raise a minimum of £800.

Jo said: “We set £800 as the target, as a charity – The Boparan Charitable Trust – said they will fund half the bubble wall – so the £800 would be for the rest.

"If we raised over that, we would get more sensory items for her.”

Friends of the Parsons family have also decided to take on a fundraising challenge to help raise more money.

A father and son team, who did not want to be named, are due to complete two or three laps of Draycote Water on August 10.

Jo added: “We are very grateful to everyone that donates and also to the dad and son team that are doing the bike ride – it’s a very kind thing for them to do.”

To donate go to: https://www.gofundme.com/f/amelia-22q-can-do