Rare Disease Day: A Traverse City Family Shares Their Story of Loss
It’s Fat Tuesday a day packed with paczkis and pledges to give things up for lent, but for some, today marks another important day in their lives.
It’s also National Rare Disease Awareness Day and one Traverse City family is sharing their journey of loss and acceptance.
It’s been nearly six months since Aurora Sophia Mercedes Splawn passed away from a rare disease, an unthinkable loss, she was just 14 days old.
We sat down with her parents who shared their daughter’s story in hopes of inspiring others in pain.
When Dustyn Splawn and Tiffany Hensley first saw their baby girl, they like every new parent, knew she was perfect.
However, Tiffany says, there was just one problem, “When it can back that she was born with the Alveolar Capillary Dysplasia it was like our whole world just shut down pretty much it was the end of the road as us as her parents and her life.”
Aurora entered the world with an extremely rare disease, the formation of the normal air-blood diffusion barrier in her lung failed.
“The Alveolar Capillary Dysplasia has only been diagnosed in 200 infants in the entire world,” says Tiffany.
“The doctor of 25 years had only dealt with one case of that we did not expect our child to be the second case he’s ever dealt with.”
The Sleeping Beauty as Tiffany calls her, was given just days to live, the end of which were full of love.
“We spent a wonderful day with her she was out of her bed everybody held her, that was the best day that honestly we had got, we didn’t get to hold her for 10 days after she was born,” says Tiffany.
“The 6th of August, it was a Saturday exactly 14 days after she was born, we decided to pull her life support.”
Her parents hope to use their Sleeping Beauty’s short life as a message to all struggling parents, “Do your research on it, try and prepare yourself, learn that, you know you read baby books and you read through all this stuff and you think aw man well all of this could happen, nowhere in them baby books is Alveolar Capillary Dysplasia, nowhere,”
Because just as Aurora was never alone, Tiffany says, neither are you, “I wanna give hopes to other people whose children are born sick or just let them know you’re not alone out there.”
There are support groups for families of those lost to rare diseases.
For more information on those and how to get in contact click here.