Stories

Ben, from Hampshire, is a very lively and sensory-seeking 12-year-old who likes to be busy at all times. He loves music, dancing, clapping and interaction with others. He also enjoys being ‘out and about’, going on train rides, running around watching the trees on windy days, and generally experiencing new things. Ben was born with a brain malformation called polymicrogyria which means the surface of his brain has too many small folds. This condition has caused Ben to have severe learning disabilities, visual impairment, mild ataxia, epilepsy and behavioural problems. He also has severe sleep issues, and hasn't slept well since birth. This has had a significant impact on his family's wellbeing. Thankfully, Variety was able to fund a safe space bed to help Ben relax, calm down, and sleep better - allowing the family to get a much-needed full night's sleep too.

Ten-year-old Amelie lives in County Durham with her family. She has a rare condition called MPPH Syndrome (megalencephaly, polymicrogyria, polydactyly and hydrocephalus). The lively young girl has always fought her condition, and tries her hardest to do the things she wants to do. She was using a static standing frame at home to support herself in an upright postion as she is unable to bear her own weight. However, what she really loves is movement – it makes her really happy - and the static frame simply couldn't help with this. Thanks to a new Innowalk funded by Variety, she is now experiencing the joy of exercising her legs, while having upright postural support.

Four-year-old Billy, who lives in Dorset, loves going to the park, He also enjoys playing with his five sisters and brothers, as well as pretending to be Batman or Spiderman. Billy has high-risk epilepsy. Despite being on anti-epileptic medication, his seizures and vomiting have continued, requiring many hospital stays and sometimes emergency resuscitations. Billy's parents approached Variety for help with funding epilepsy monitoring equipment to give them peace of mind at night. They specifically needed an alarm radio system that can detect the vomiting or seizures in their early stages, giving them critical time to intervene and get appropriate help if necessary, hopefully lowering Billy's risk of sudden unexpected death in epilepsy (SUDEP). Thankfully, Variety was able to fund a monitoring radio device for Billy.

Andrew, who is 16 years old, lives in Hampshire with his mum, granny and his 'therapy cat', Lucas. Andrew has Complex Regional Pain Syndrome (CRPS) due to nerve damage caused by minor nail surgery. He struggles with intense, ongoing pain. He also has allodynia in his right foot, which means he cannot bear any touch on it or walk without using crutches or a wheelchair. Andrew had a basic, heavy, self-propelled wheelchair which he really struggled to manage, and he kept crashing into trees. He tells us: “I was desperate for a suitable wheelchair for college, that would help me to be independent and get around easily”. Thankfully, Variety was able to step in and fund a lightweight active wheelchair for him, which has made an enormous difference to his life.

Rhys, who is 12 years old and lives in Herefordshire, has ataxic cerebral palsy, which affects his balance and coordination. He also has sensory neuropathy and progressive cerebellaratrophy. Because of his conditions, Rhys has 'wobbly', relaxed muscles, and this leaves him with poor balance and a lack of muscle control. To stop him from slipping around on car journeys, he needs to use a specialised postural car seat – an ordinary seat belt simply isn't enough keep him safe. However, Rhys had outgrown the car seat he had been using. It no longer gave him adequate support, which made car travel dangerous for him.

Alfie, who is nine years old, lives with his family in Derbyshire. He has quadriplegic cerebral palsy, which means he is unable to walk and relies on a wheelchair to get around. Alfie had significantly outgrown his old powered wheelchair. After years of daily use, it was almost completely broken down. Variety stepped in and provided Alfie with a much bigger and more comfortable powered wheelchair, one that gives him proper postural support, greater convenience and a degree of independence that simply wasn’t possible before. Here, mum Emily describes the difference the new chair has made to Alfie and the whole family.

Isabella is a lively six year-old girl who has autism, ADHD and a sensory processing disorder. She lives with her mum, Louise, and her twin sister, Lilianna, in County Antrim, Northern Ireland. Isabella is a busy and active child, who loves jumping on a trampoline, swinging, running and dancing. However, because of her conditions, she experiences extreme anxiety and is prone to frustration, anger and outbursts when she is feeling overwhelmed. Isabella can have difficulty focusing and concentrating on academic work in mainstream school. She particularly struggles to learn phonics and numbers. To help provide relief for Isabella’s anxiety and emotional outbursts, Variety funded an outdoor combination jungle gym. Here, mum Louise shares the difference this has made to her daughter.

Fourteen-year-old Jessica, who lives in Devon, has cerebral palsy, and is unable to stand or walk unaided. As she’s grown older, her muscles have increasingly stiffened, which is a result of having too much muscle tone – a feature of her condition. Not having the freedom to move independently has an impact on Jessica’s self-esteem, while a lack of physical exercise over the long-term means she may develop even more muscle tightness. It also places her at an increased risk of contracting a number of chronic diseases. Here, mum Katherine tells us about the life-changing difference an Innowalk from Variety has made to her daughter.

Thirteen-year-old Illias has a diagnosis of lumbosacral spina bifida and incomplete lower limb paralysis, which means he is reliant on a self-propelled wheelchair for independent mobility. A keen sportsman, Illias already has an impressive basketball and athletics track record. Variety helped Illias get a new customised basketball wheelchair and, more recently, a bespoke athletic racing wheelchair, both of which have been a 'game changer' for Illias, according to proud mum, Sana. He lives in north London with his parents – Sana and Hamid – and older brother, Adam.

Faith is a nine-year-old girl from Buckinhamshire who has quadriplegic cerebral palsy. Compared with her peers, her motor skills are delayed, and her movement patterns are immature and slow. Here, Faith's mother Lily describes the difference that having an active light wheelchair and a lateral trunk support, funded by Variety, has made to Faith's life.