Motherhood is a journey filled with challenges, but every step is worth it for the love and joy it brings. Zoe Hummel joins the show in this special Mother’s Day episode to discuss her son Mostyn’s emotional story to diagnosis, and the unique challenges and triumphs of being a nano-rare mom.

• How Zoe met her husband, Mostyn’s father
• Zoe’s violin origins and playing with Rod Stewart
• Mostyn’s journey to a diagnosis
• Zoe’s advice for parents observing abnormalities in their children’s development
• Mostyn’s severe epilepsy
• A road trip to Boston Children’s Hospital in the middle of winter
• The ‘unlucky’ diagnosis of KCNB1
• For-profit companies promising false hope

Zoe Hummel began music training by Suzuki method at the age of two and she started playing the violin when she was three. She was classically trained and eventually went on to tour with Andrea Bocelli, Sarah Brightman, The Three Tenors, Rod Stewart, Josh Groban, Tommy Lee, Dave Navarro, Styx, Ricky Skaggs, and others. She was also contracted for studio work and recordings by many artists such as Jon Secada and Yanni. Beyond working with individual performers, she performed in multiple broadway and opera shows. She also performed in a show at Disney’s Animal Kingdom.

In 2011, Zoe and her husband were blessed with a son – Mostyn. Mostyn presented mild cerebral palsy, hypotonia and he was developmentally delayed. Initially, Zoe was still able to share her gift as a violinist and care for Mostyn. Then, Mostyn began having seizures when he was 5. Within a few weeks, he was having 4 types of seizures and over 30 tonic clonic seizures per day. For the next few years, Zoe’s time on the stage was replaced by time in hospitals with her husband and their son. She gave up her career to be a full time care taker for their child, who is unable to attend school. She now home schools Mostyn, teaches him about the bible, takes him to therapies, takes him to doctors appointments, manages his medications, administers his feedings through his g tube, cleans him, dresses him, and together with her husband cares for Mostyn around the clock – most exhaustively when he is suffering from seizures. Zoe and her husband use the game of baseball to keep Mostyn happy and motivated to keep fighting. Zoe has amassed quite an extensive knowledge of the game that keeps her son so happy.

We cannot do
this alone

We hope that you join us on this journey to discover, develop and provide individualized antisense medicines for free for life for nano-rare patients. The ultimate personalized medicine approach – for free, for life.