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Anneka Photo

Anneka is proud Grandma to Holly and Max who have CLN2, she tells us about them.

I am Grandma to Holly aged 5 and Max 3. There diagnosis of Batten Disease in December 2022 was such a massive shock. I adore my grandchildren and have always helped to look after them.

Holly sadly has quickly become very disabled she is unable to walk or talk and her eyesight is extremely poor. Holly began on Brineura® brain infusion treatment but unfortunately the treatment caused Holly distress and was discontinued. Max received his diagnosis early because of Holly. He began brain infusions, and he is doing well. He is a very happy boy a real joy. Every 2 weeks he goes to Manchester Children’s Hospital for his treatment and the staff there are amazing. We don’t know what the future holds for Max and take things one day at a time.

Holly is my first grandchild, I cuddle her a lot and she will give me wonderful smiles. My heart breaks for Holly and what has happened is everyone’s worst nightmare. When I see little girls running about and chatting away, I am so pleased that they are well and so sad that Holly is not. I try to support my family as much as I can. Holly and Max’s parents, James and Emily are incredibly brave.
I do hope and pray that scientists will come up with an answer to bring an end to this cruel disease.

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