Rare Disease Day 2022: Meet Lucienne

When Lucienne was just 5 months old, she was diagnosed with Agenesis of the Corpus Callosum (ACC) a condition that means the main bridge between the two halves of her brain is absent. Two years later, Lucienne was further diagnosed with 3q13.31 deletion syndrome. This condition was first identified as a syndrome in 2012 and is still emerging, with only a handful of diagnosed cases.

Because of these two conditions, Lucienne’s development is globally affected, with immature gross motor skills, learning difficulties, and a myriad of associated manifestations.

But despite all the many everyday challenge Lucienne faces, she remains a positive and enthusiastic child.

Lucienne and her family first came to Starlight through a Wish that helped develop her confidence in numerous ways.

When the Covid-19 Pandemic and its ensuing lockdowns began, Lucienne and her family started taking extra cautions because of Lucienne’s vulnerability. The introduction of Starlight’s virtual parties were so welcome and incredibly beneficial to Lucienne.

Virtual parties, like the Virtual Spy Party, Zoo Party and Magic show have been great for Lucienne. She loves interacting with the facilitators, participating in the challenges, and her mum, Camille, could always hear Lucienne laughing and shouting with huge enthusiasm.

Lucienne and her mum were also able to attend Starlight’s Summer Festival as well as a a Starlight Day out at St. George’s Park football centre. Both outings were huge highlights and wonderful opportunities for Lucienne to relax and have fun in safe environments.

Through our Events and Experiences, Starlight provides Lucienne, and many other children like her, with opportunities to make memories, develop their self-confidence, and simply relax and have fun away from medical settings.

Please visit our Events and Experiences page to learn more.