Declan loves rugby union and surfing.

When his legs started to fail him, he and his family went through a difficult journey of hospital visits and countless tests in search of answers.

While at first tests suggested Declan has an unknown leukodystrophy, genomic analysis through our Leukodystrophy Flagship helped piece together that Declan actually has a very rare genetic condition called VPS13D Spinocerebellar Ataxia.

A confirmed diagnosis has given Declan a path forward in managing his condition so he can focus more on doing what he loves.

The results were good, as they gave my condition a name… it’s helped bring peace of mind to me, my family, and my friends,” says Declan.

Watch Declan’s story below: