First double Infusion
July 24, 2019
Today was a big day…..for the first time we brought both kids for treatment at the same time. It takes both of us to keep
Nationwide Children’s Hospital
July 22, 2019
With the help of my Mother-In-Law, we hoped on a plane and headed to Columbus Ohio to see the leading Battens Specialists.
National Battens Conference
July 20, 2019
Every year the Battens Organization in the US holds a conference for all the families affected by Battens disease.
Honda Indy Family Day
July 12, 2019
Claire was lucky enough to get picked to participate in the Honda Indy Family Day with Make A Wish.
Last Infusion on her own
July 10, 2019
Infusion #5 is done. Hasn’t become any easier, it’s such a stressful procedure that needs to be done just right.
Josef’s first Infusion
July 4, 2019
We did it! First fusion was successful. Josef is the youngest in Canada to ever be treated for CLN2 and one of the few in world