When Lee and Lori Greenwood welcomed their second daughter, Noa home from the hospital they had no reason to think she wouldn’t mirror her big sister, Max.  As Lee states, “Of course we knew the details would vary, but as the parents of a typically-developing first kid I think we just assumed that Noa’s journey would follow more or less in that way.”

Lee and Lori soon noticed Noa’s path seemed to differ from Max’s in more than just typical ways.  “She had global developmental delays that were clear from a pretty young age. For the first few months after she was born Noa would cry incessantly; the only breaks she would take were for eating, sleeping and taking showers. Other than that she was inconsolable. That was the first indication that something was off and from there we took the long and winding path towards an eventual diagnosis (right before her 1st birthday).”

Exploring every option possible the Greenwoods found hope in an experimental treatment.

Noa was the third patient dosed as part of a clinical trial that uses gene therapy to treat Canavan disease. She was dosed at 22 months in Boston, at MassGeneral Hospital.

“She’s a spunky, funny, smart and loving little girl. She adores her big sister, Max, and anything and everything Daniel Tiger. She’s thoughtful and considerate and quite social, always making friends wherever she goes. And to our never-ending delight, she’s got just enough naughtiness to keep us on our toes.”

“Our oldest, Max, gives new meaning to the phrase Super Sibling. We could write tomes about her compassionate, kind and generous soul. She loves her sister with her whole heart. And she’s a fantastic role model for Noa, teaching her all the good and naughty things that an older sibling is supposed to.”

“We’ve learned so much from both our kids, but having a kid with a diagnosis like Canavan has taught the two of us, both Type-A folks who like having answers to questions, to be more comfortable with the unknown. We’ve had to learn to not know and be ok with that. It’s a journey but we’re working to get there.”

“When Noa was first diganosed we were immediately welcomed into the Canavan and larger NTSAD community. Every single person we met knew exactly what it was like to get this diagnosis, to walk this path and to face the reality of what this disease means to your family. Just finding that community was the most helpful thing for our family at the moment we needed it most.”

“We hope that Noa’s experience can help bring hope to our entire community. These diseases are awful for all the obvious reasons. We want to get to a point where newly diagnosed families are given therapeutic options, not just the awful message to love your kid for as long as you have. We want every family to have hope and we think we’re getting closer to that reality.”

Lee and Lori stay grounded in the present.

“We have no idea what tomorrow, next month or next year holds for our family. We hope Noa continues to develop and excel, but she’s part of a trial so her path remains unknown. We just love that we get this amazing experience today, now. We never thought we’d have what we’ve had so we’re just thrilled to be able to share today’s experience.”