This is the heartbreaking story of a brave young girl slowly losing all motor skills to Batten Disease. Effie is an adorable little lady and while the worst possible things happen to her, she just keeps on smiling. Interviewing Effie’s lovely mum Carly, I discovered that when Carly was first born, there was nothing mum and daughter loved more than pitching a tent in the garden and climbing in to read stories. Isn’t that a lovely image? And now, with their days together numbered, they still pitch their tent and read their stories. Memories are sacred and keep the family going.
For more information on Batten Disease, please visit www.beeforbattens.org
If your child is facing impossible health issues and you’d like to raise awareness and tell your story, please get in touch today. We shared Carly’s story in Pick Me Up magazine over Christmas and in a few weeks, look out for Carly in Reveal magazine too.