“We cherished the pure joy of holding our boy and soaking up the peace.” Mimi Petty, whose youngest son Bertie died from CLN1 Batten disease aged 4, explains why she set up Bertie’s Helpers and the work they do for…
“I wasn't sure what I could do to help, so, as well as other fund raising I chose to release music.” David McGovern, who owns the record store Beyond Vinyl in Newcastle Upon Tyne, tells the story of why he…
“The big thing that has changed during my career has been the development of effective treatment for CLN2 – we can now treat children to help them avoid losing skills.” Dr Richard Brown shares his story of treating children with…
“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…
“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…
“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…
“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…
“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…
“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…
“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…