Little Lottie Kirkbride has a rare disorder which affects only 500 children worldwide.
The condition means the five-year-old has learning difficulties, severe speech and language difficulties and significant development delay.
Her family is now hoping to raise money to buy Lottie a new specialised wheelchair which would help her get out and about and enjoy her life to the full.
Lottie has Isodicentric 15 (known as Idic 15), a duplication of the 15th chromosome.
While her condition is fairly mild, she needs full-time care.
Lottie, who goes to Morecambe Road School, has also recently started having seizures.
Anna and her husband Chris, 42, first noticed something was wrong when Lottie wasn’t reaching early milestones which their son Mani, now seven, had reached.
Anna said: “By about 10 months old she wasn’t sitting up so we were referred to Longlands Children’s Clinic.”
After undergoing various tests it was siggested that genetic testing was carried out, and Lottie’s condition was eventually diagnosed.
She has been having phsyiotherapy, occupational therapy and speech therapy since she was 10 months old.
Mum Anna, 37, said: “Lottie does walk but because of her hypermobility she tires extremely easily.
“She needs support which means going out can be difficult and because she has sensory issues she needs her wheelchair to feel safe and secure.
“The NHS provide a basic wheelchair but this is only suitable for urban use.
“As a family we like to get out to the lakes or outdoor activities and we really need something more suitable for Lottie.
“Being on days out really helps Lottie’s development and means we aren’t restricted in what we can do as a family.”
A new specialised wheelchair would mean the family, from Shrewsbury Drive, Lancaster, would have greater freedom to enjoy a normal life.
Anna said: “We are trying to keep everything as normal as possible for as long as we can. We try to live day to day.
“She’s nearly outgrown her own wheelchair, but a new one could last her for up to 10 years.
“It’s something she would have for years so we could plan ahead.
“It would mean we could go out as a family, even going to the zoo or to the Lakes for the day.
“She would have something nice to relax in when we go out.
“We could be more like a normal family instead of being tied to the house.”
Local gym owner Ryan Donohue is hoping to help the family raise the £1,000 they need for a new wheelchair.
Ryan, who runs Fitness Formation, wants to hold a family sports and fun day at the University of Cumbria’s Lancaster campus.
The day, hopefully to be held in August, will hopefully include children’s races and challenges, a bouncy castle and barbeque.
Anna said: “I met Ryan Donohue through doing a six-week challenge at Fitness Formation and he found out about Lottie and offered to help.
“We are extremely grateful and really appreciate his kindness – it will really make a difference to Lottie.
“For Ryan to do this is just amazing; we would have to apply for a grant without his help.”