Metro colleague, Dani Jealous’ son has very sadly recently been diagnosed with Batten Disease, a rarely inherited condition that affects the nervous system and is a genetic life-limiting neurodegenerative disease.
The genes causing Batten were only identified in 1995 and the only current medication is still undergoing NHS evaluation.
In Dani’s words. “There is no treatment or cure for Oscar, and we can’t predict what he will need and when he will need it. Every day with him is a gift and we will react to his needs with the support of our family, friends, @BeMoreOscar followers, the NHS and the Batten Disease Family Association.”
Dani’s Metro workmates are today raising awareness of Batten Disease, to support Dani and her family, by wearing orange and posting updates on social media.
Dani has set up a Facebook page @BeMoreOscar to share Oscar’s story, talk about this devastating condition and the positive ways that the family are facing, including Oscar’s growing Bucket List.
Dani’s posts are often difficult to read. But they are also uplifting and heroic and deserve to be shared, to support the whole family.
Today is International Batten Disease awareness day, So Be Kind, Reach out, Subscribe, Like, Share, Get Involved but most of all #bemoreOscar