The family of a five-year-old Clifton girl have raised thousands in the hope important medical research can take place to provide a better understanding of her rare condition - and the campaign has been backed by a well-known actress.
Frankie Pykett, who was diagnosed with type two Acrodysostosis in August 2018, has been left needing a wheelchair and her parents are unsure what the future holds for their daughter.
Known to be one of 15 people with the condition in the UK, there is currently no cure, and her mum described it as being "characterised by skeletal malformations, growth delays, short stature and distinctive facial features".
Her parents were given the "chance of a lifetime" in raising money on behalf of a charity called Acrodysostosis Support and Research to help others.
Working with the Great Ormond Street Hospital Charity [GOSH] and Sparks Children's Medical Research Charity, the charity had to raise £62,500 by April next year with the aim of potentially receiving wider funding to be allocated to a research project.
The family and charity have smashed their target - in just a matter of weeks - and hope a research applicant can be chosen in the future.
Frankie's mum Kim Brown, 27, said: "We were doing a 20-day push but we managed to hit the £62,500 on Friday. It took us 18 days in total."
The family hope up to £250,000 could potentially be spent on Acrodysostosis research.
More than 1,000 people have donated from all over the world.
Actress Olivia Colman, known for her role in the Netflix drama The Crown, also pledged her support to the charity in a video.
As well as having a number of associated conditions, Frankie is moderately deaf, has an undeveloped jaw, "widely spaced eyes" and a "slightly lower set of ears". She also has swelling to her optic nerves, meaning there is a chance she may go blind.
Frankie, who goes to the Glapton Academy, Glapton Lane, has undergone various operations, including procedures to measure the pressure inside her head. She also struggles to walk far and has a wheelchair.
Through the charity's work, Frankie is known to be one of 15 people with the condition in the UK. Meanwhile, more than 90 confirmed patients are known to the charity worldwide.
Speaking of the importance of potential research, Ms Brown, Frankie's carer, said: "It's obviously especially [important] to us because Frankie seems to be one of the more complex children out of the 94. She's got a lot going on in lots of different parts of her body.
"Finding treatments and medications that will support the children is the most important thing to us as a family and the majority of the other families.
"Because there's so little known about the condition, each time we go to a new hospital or a new doctor it's kind of like they've got very little knowledge of what Acrodysostosis is.
"There's so much unknown as she gets older, just things like when she hits puberty, if she wants children of her own.
"We get asked all the time 'what's her life going to be like?' We have no idea so to have a little bit more clarity on things like that would be great."
Mum-of-two Ms Brown previously described the condition as a "really rare form of dwarfism".
Nottingham Forest also pledged their support to the family's campaign.
Frankie's dad Alex, 26, said: "The memorabilia they gifted was a signed football from the players, a pair of worn boots by Lyle Taylor - they were a signed pair of boots - and then also a signed pair of football gloves from Brice Samba, the keeper."
Those items were auctioned off and raised £390.
Mr Pykett, who works for a company called Appliance City, based in Bunny, said the firm had also donated £1,250.
Excluding the donation from his company, the family have raised £5,146.
A spokeswoman for GOSH Charity and Sparks said: “Congratulations to Frankie’s family, the work they are doing to raise awareness of their daughter’s rare condition and to fundraise for the Acrodysostosis Support and Research charity is very inspiring to see.
“As part of our 'national call', where we make funding available to paediatric researchers from across the UK to further their work into rare and complex childhood health conditions, we also partner with disease-specific charities that seek to fund high-quality medical research into their condition.
“We are currently reviewing the research funding applications we received across a range of different rare and complex childhood health conditions, and expect to announce the successful applicants in early 2021.
"Should an application from a researcher in the area of Acrodysostosis be successful, we would look to co-fund this work in partnership with Acrodysostosis Support and Research charity.”
