Beatrice’s mum Anna tells us their story
Beatrice has Batten’s disease CLN2.
Bea is a playful little girl, who has many friends and lots of passions. With her striking blonde hair and her awesome fashion sense, Beatrice is one of a kind. If rainbows were physical, one would permanently surround her. She radiates joy and anyone who meets her can do nothing but smile.
Beatrice is 4. Her world is full of Gabby’s Dollhouse and other brightly coloured tv programmes. She is a Bluey superfan (she’s met the characters 3 times in the last 9 months!) – and she instantly knows which episode is on within seconds.
Her laugh is unmistakeable; totally adorable, and she has an inquisitive mind, bubbling with questions and curiosity.
Bea was diagnosed with Batten’s CLN2 in July 2023 and has been enduring fortnightly brain infusions of Brineura at Manchester Children’s Hospital since August. Since then, Bea’s vocabulary has improved, and she has been learning new physical skills too. She can now ride a bike (with stabilisers!) and even attends dance classes! Her listening skills and co-ordination have both improved recently.
As is the case with Batten’s Disease, visual loss is still a major concern. At the moment, we are thankful that Bea’s vision is holding but there are signs of some early deterioration. We are so very grateful for the Daisy Player that we were able to purchase for Bea through a BDFA small grant. This allows her access to music and audio books – two of her favourite things!
Beatrice is in school, which she absolutely loves, and in return, the school family love her. She has a VI teacher that supports her every month, and she has managed to build up a rapport with staff and children alike. We are making every effort to aid Bea as she faces her day-to-day life dealing with this disease.
Bea is a 4-year-old who appears like any other. Does she want to puddle splash? Of course! Does she want to sing to the top of her voice as if nobody is listening? Yes!
Beatrice is a pure pocket of joy. A small human with a big smile. She radiates happiness on even the darkest of days. Yes, she has Batten’s Disease. But, more than anything, she is simply… Bea.