Lexi Ducker, a six-year-old girl from Warrington, Cheshire, was diagnosed with Barakat syndrome, an ultra-rare genetic condition characterized by sensorineural deafness. Her mother, Joanna, noticed she was having trouble hearing, and after tests, Lexi was diagnosed with the condition, which affects only 200 people worldwide. Barakat syndrome can also lead to kidney problems and low calcium levels. Despite the diagnosis, Lexi’s parents view it as a positive as she can receive treatment and close monitoring. Her low calcium levels are being managed with supplements to keep her healthy.
Joanna Ducker, an HR business partner, and her husband James, a sports journalist, have no family history of Barakat syndrome. Lexi’s three older brothers are not affected, and her parents are grateful for the swift diagnosis allowing them to provide her with treatment. Lexi, who attends her local primary school, is confident and has proudly shown off her hearing aids to her classmates. Joanna is raising money for the charity Sense, which supports children and adults with complex disabilities, including those who are deafblind. She is running her first marathon in London to raise funds for the charity.
Barakat syndrome was diagnosed in Lexi after initial tests revealed moderate to severe hearing loss at the age of two. Genetic tests confirmed the diagnosis, with doctors determining that the condition was a spontaneous event and was not inherited. Lexi’s family acknowledges the rarity of the syndrome, with only a few hundred people worldwide diagnosed. Despite this, they are grateful for the healthcare support Lexi is receiving for her condition. The family remains positive, and Lexi’s confidence and resilience are evident through her interactions at school.
Sense’s Head of Events and Community Fundraising commended Joanna for her efforts in raising funds for the charity as she participates in the London Marathon. Lexi and her older brother Daniel are also taking part in the Mini London Marathon for children. Joanna’s dedication to supporting individuals with disabilities is fueled by her daughter’s journey with Barakat syndrome. The family’s focus on promoting understanding, connection, and value for those with complex disabilities aligns with Sense’s mission. Joanna’s fundraising efforts have gathered close to £3,000, with donations going towards supporting individuals with disabilities through the charity.
The community’s response to Lexi’s journey with Barakat syndrome has been encouraging, with Joanna’s marathon participation raising awareness and funds for the cause. Her commitment to supporting individuals with disabilities stems from her personal experiences with her daughter’s diagnosis. By showcasing the challenges and successes of individuals living with conditions like Barakat syndrome, the Ducker family hopes to inspire others to embrace differences and provide support for those in need. Sense’s ongoing work in improving the lives of individuals with disabilities is further strengthened by Joanna’s fundraising efforts through the London Marathon.
In conclusion, Lexi Ducker’s journey with Barakat syndrome, a rare genetic condition, highlights the importance of resilience and community support in overcoming challenges. The family’s positive outlook and dedication to raising awareness and funds for individuals with disabilities demonstrate the power of unity and compassion. By participating in the London Marathon and supporting the charity Sense, Joanna Ducker is making a significant impact in promoting understanding and inclusivity for those living with complex disabilities. Lexi’s story serves as an inspiration to others, showcasing the strength and courage needed to navigate rare conditions and advocate for a more inclusive and supportive society.
