When Adrianne and her husband had their son Xavier, they discovered he had the incredibly rare condition called Schinzel Giedion syndrome. Children with this syndrome typically don't live past two years old, but Xavier beat those odds and lived to be almost eight years old. Earlier this year he died, just shy of his 8th birthday. In this episode Adrianne talks about his diagnosis, his life and his death.
When Eric and his wife found out their newborn son, Liam, had Miller Dieker Syndrome, they didn't react the way many couples would. That's because they weren't like many couples. They had already lost multiple pregnancies and suffered the still born birth of their son Ben. So instead of grieving Liam's diagnosis, they got on with being the best parents to him that they could possibly be.
When Heather Avis and her husband realised they couldn't have children, they turned to adoption. The adoption journey took them to places they never thought they would go and the now have three children, two of which have Down Syndrome. This episode talks about that journey and Heather's upcoming book, The Lucky Few.
Artist, writer and art teacher, David Borden lost his daughter to complications of cerebral palsy in 2015, just shy of her 16th birthday. Since then he has been working on a graphic novel, And So We Rise, which chronicles her life and shares her story.
After years of battling to find a diagnosis, Angela and her husband Gabe finally got one for their daughter Ali when she was five years old. Ali had Fibrodysplasia Ossificans Progressiva, and her body was slowing turning itself from muscle to bone.
Now at nine and a half, Angela and Gabe are doing everything they can to keep their daughter mobile and enjoying her life as much as possible. This episode tells their story.
This episode features the amazingly talented writer, Heather Kirn Lanier, who writes the beautiful blog Star in her Eye, telling her story about her daughter Fiona. Fiona was diagnosed with Wolf Hirschhorn Syndrome, or 4P deletion after doctors noted her small size as an infant. During the episode, Heather explains about Fiona's diagnoses, how she and her husband Justin came to redefine what a "problem" was, and how communication has changed life for Fiona. There's also a brief cameo from Fiona herself.
Meghan and her husband Brian never thought they would be moving almost 2,000 miles across the United States for their daughter to be treated with medical marijuana. But when their baby daughter, Vivian started having seizures due to Dravet Syndrome, and standard pharmaceuticals weren't working. That's exactly what they had to.