In this episode the tables turn and Tessa gives up her spot as host and becomes the guest to share her own special needs parenting journey. With special guest host Kelsey Dilts McGregor, Tessa talks about her journey with Eva, from her pregnancy to her diagnosis of CHARGE Syndrome, to her death.
For the first 18 months of Carrie and Gabe's son, Frankie's, life, he was in and out of hospital trying to get on top of infections and seizures caused by a rare combination of Mowat Wilson Syndrome and infantile spasms, or West Syndrome. Now, they have been out of hospital for 6 months and are sharing their story here.
Ashley Jones and her husband Keith had no idea of the rollercoaster ride they were going to get on when they had their first child, Victoria. Victoria, who is now a happy toddler, was born with a tracheoesophageal fistula (TEF) which is an abnormal connection (fistula) between the esophagus and the trachea, and suffered global and universal brain damage through the labour process. This episode follows their journey as they came to terms with both her congenital issues and her brain damage.
Amy Street is the new web series from Bella Pacific Media which tells the stories of 9 residents at the Supported Lifestyle Hauraki Trust in Thames, NZ. The Trust is houses and takes care of more than 60 adults with disabilities. It's more than just a special needs facility though, it's a home, a community, a place for these 9 people and their neighbours to live their best lives. This episode talks to Viv Kernick and Kirsty Griffin from Bella Pacific Media about their web series Amy Street and what it was like to make it.
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.
When Kim and Roy's son Dylan was born deafblind and with heart and kidney abnormalities 20 years ago, they didn't react the way you might expect. The loss of their first son Kyle, and a later miscarriage meant that while some might be plunged into despair, they instead were grateful and full of hope for their son's life. This episode explores their journey with Dylan and all the ups and downs CHARGE Syndrome has brought into their life.
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.