Lilee-Anne, who lives in Wolverhampton, loves Minnie Mouse and spending time with her family. The nine-year-old also relishes new experiences and trying different activities. However, aspects of everyday life are a struggle for her as she has various life-limiting conditions, spastic quadriplegia and scoliosis, and recently underwent major hip surgery. Lilee-Anne needs constant help from her parents to do most things, as well as one-to-one support at school. Given that any infection could be fatal for her, she also requires round-the-clock care.
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 and 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, he's continued to have seizures and vomiting, 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.
“I was desperate for a suitable wheelchair for college, to help me be independent and get around easily”
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. Andrew also has Allodynia in his right foot, which means that he cannot bear any touch on it and cannot 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.