If only there were just tantrums… poor Grace was dismissed by GPs as going through a ‘tantrum phase’. Sadly, what her change of behaviour actually revealed was the utterly devastating Batten’s disease. Mum Izabela shares her story in Bella magazine this week. It’s heartbreaking, but if her drug trial starts soon they hope to ward off and delay the onset of the debilitating symptoms.
For more about Batten’s visit the BDFA
Another great resource is the website owned and run by the Rich family – The Nicole and Jessica Rich Foundation
I have written about the Rich family before and they are incredible. For support and information if you have just entered the Batten’s world, Gail is a fountain of knowledge.
Izabela’s story is out in Bella now.