Addy’s Batten Adventure
Addy's Batten Adventure
I meet many amazing children in my job, but the other week I was introduced to an extraordinary little girl.
I had the privilege of meeting Addy as part of a family photography shoot. The most beautiful soul, she came straight over to me and gave me a big hug, before grabbing my hand to hold. I was humbled by her sparkle and energy.
Addy is 4 years old and has Batten’s Disease. Currently, there is no cure. Batten’s Disease is the collective name for a large group of diseases that affect the neurological system, and there are only 100 children worldwide who are known to have this specific form of the illness. As I write this, Addy is recovering from brain surgery, conducted to try to stop her condition from deteriorating further. Following surgery, Addy will need to travel to Great Ormond Street Hospital every 2 weeks to receive treatment for the rest of her life, which may only be another 4-6 years. This cruel disease will limit her life to between early childhood, or at best, young adulthood.
Specialist symptom management and therapy are essential to assist in maintaining a good quality of life for children and their families. Holistic support for parents and wider family members is extremely important throughout their journey.
I’m writing this post today because this photoshoot affected me greatly. A mother myself, I was struck by the love and strength in this family unit. Dave and Hayley are incredible parents, and Samuel is an amazing big brother. As a family, they need support, but I also want to raise awareness of this horrid disease. By raising awareness of this rare disorder, we can improve early diagnosis, encourage policymakers to increase access to services and fund research, as well as reduce the feelings of isolation or the discrimination faced by patients and their families. Please keep an eye out on my website as I plan to support a fundraiser for Addy’s family in the coming months.
As you can imagine, the treatment and ongoing care is a huge financial challenge for Addy’s family. They currently have a Go Fund Me page set up to support the management and ongoing needs for Addy. Please consider helping their cause:
You can also follow their journey at
More information on Batten’s Disease can be found here
Any help or support you can give will be thankfully received.