Halli’s Story: Halli-and her family are helping to raise awareness of children’s genetic conditions through the annual Jeans for Genes charity week.
Halli-Ann was born in January 2026. She had troubles from the offset with low muscle tone and issues latching, which resulted in her needing a feeding tube. She then had some periods of low oxygen that meant she had to go to NICU. Luckily, Halli’s oxygen levels recovered but she continued to have issues with feeding, so doctors decided to conduct further tests.
Fast forward to being six weeks old and Halli’s family’s world was shattered. Halli was diagnosed with a rare gene disorder: Bainbridge-Ropers syndrome.
Although this gave Halli’s parents answers, it revealed a whole range of issues Halli might have to deal with in life.
Bainbridge-Ropers syndrome is a rare neurodevelopmental condition caused by changes in the ASXL3 gene. It’s so rare that there are only around 500 people diagnosed worldwide and around 40 in the UK. As with many conditions, there is a spectrum of symptoms with varying severity that Halli could have, and no one will know how high these hurdles will be until she reaches them. These symptoms may include speech delay/absence, muscle and movement issues, learning disabilities, feeding problems and many others.
At this point, Halli’s parents were introduced to the charity Unique, who specialise in providing information and support on rare genetic conditions.
The team at Unique provide contact details of other families going through the same issues. Halli’s family were also able to access the wonderful community across Unique’s social network and their unrivalled platform for raising awareness of rare disorders and providing invaluable support.
A diagnosis like Halli’s can make the world feel incredibly lonely and the future look uncertain. This is why a charity like Unique is so important and has such an impact. Having a trusted source for information is like an anchor for families during the instability of diagnosis.The community Unique has formed means those accessing information can draw on a group strength that they may not have had access to otherwise.
The Jeans for Genes campaign has provided valuable unrestricted funding to allow charities like Unique to provide this much needed support.
With grant funding from Jeans for Genes, Unique has been able to take family connection a step further. Earlier this year, in March 2026, they held their first conference in over 10 years where lots of families got together to learn, connect and form friendships that will last a lifetime. They had a specialist creche so parents could relax and take in the high-quality information from specialists on topics that covered all areas of life with a rare chromosome/genetic disorder. The event included evening entertainment for all the family and a meal where everyone could sit, be themselves, not worry about what others might think and chat about the day that they had.
Monies raised throughout the campaign allows Jeans for Genes and their parent charity CGD Society to provide grants to charities like Unique to support their work with children and families with genetic disorders.