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Debbie’s Story

“Batten disease stole his future, although his spirit is still there intact, never to be defeated, I can assure you, that is a fact” Debbie Norris, grandmother of 22-year-old Jordan who has Batten disease, finds that putting her feelings into…

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Jennifer’s Story

“I focused on the beauty that my children have brought to me…they are each my lotus flowers and Batten was the murky waters.” Jennifer VanHoutan, mom to four children, two of whom have been lost to Batten disease, tells of…

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Elliott’s Story

“A year ago Elliott was more physically able, more communicative, he was easier to play with…” Claire Jackson, mum of 4-year-old Elliott, explains how hard it was to get a CLN2 diagnosis and why early testing is vital to prevent…

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Alexandra’s Story

“I sometimes feel jealous when I see friends with their siblings doing things together that I wish I could do with Reece.” Reece’s 18-year-old sister Alexandra shares her story about the joy of having a new baby brother, and how…

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Zlatko Sisic’s Story, BDFA Chair

“I have a massive desire to see the patients and families having their lives improved - that is my only motivation”  BDFA Chair, Zlatko Sisic, tells his story of how his own rare disease, medical training and experience give him…

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Matilda’s Story

“I try to walk, I try to talk, I try to eat each day. This disease is slowly talking parts of me away.” Mel, mother to 11-year-old Matilda, the first child in the UK to access enzyme replacement therapy, shares…

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Robert’s Story

“We smile at the very special memories we made in those last ten days: recreating holidays, playing Rob’s favourite music, and setting up the pub in his room.” Pam Turner whose son Robert died at the age of 33 from…

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Samuel & Alice’s Story

“A two minute phone call confirmed what my heart already knew. My beautiful, intelligent, sassy, baby girl had been given the same death sentence as her brother.” Natalie Evans, describes the grief of finding out that her youngest daughter Alice…

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Auntie Liz’s Story

“Our children found it heart-breaking, as we all did, but to see them being brave on each visit, not knowing if it was the last, was just so tough.” Liz Brownnutt, auntie to Ellie Mae and Caleb, who died from…

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Ophthalmologist, Robert Henderson’s Story

“I knew I loved paediatric ophthalmology but wanted to combine this with retinal surgery so that I could be a part of the new gene therapy revolution.” Ophthalmologist, Robert Henderson, tells of how his medical career path led him to…

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