ToughBaby is inspired by the journey of Presley and Riley Olson, identical twin girls born prematurely to a young Air Force couple stationed in Aviano, Italy.
The babies were born with a rare gene mutation. It resulted in a barely functioning immune system, a disorder known as Severe Congenital Neutropenia (SCN).
Without a life-saving bone marrow transplant, they were at great risk from bacteria-caused illness. (Imagine a COVID-type threat, only from basically everything!)
Unlike “normal” newborns, Presley and Riley didn’t get a happy homecoming. Instead, they stayed quarantined in a tiny Italian hospital room, surrounded by machines and cared for by masked, gowned medical teams.
For months, they were subjected to endless tests, biopsies, evaluations and injections of immune boosting G-CSF. The Italian hospital had no plan and offered no hope.
Plan for a Cure
Eventually the Air Force stepped in. They wanted the girls home in the United States, where their condition could be treated aggressively. The babies were transported by the Air Force to Washington state at about three months old.
U.S. medicine offered a welcome surprise: no more masks and gowns! For the first time ever, Presley and Riley had skin-to-skin contact with other humans. For the first time ever, they were kissed by their parents.
Friends and family followed on CaringBridge.org and social media, as the twins eventually prepared for bone marrow transplants at Seattle Children’s Hospital. A generous, anonymous donor provided the life-giving gift of bone marrow.
The transplant team surrounded them with care, central lines were surgically implanted, and their tiny bodies underwent chemotherapy to destroy any possibility of rejecting the new marrow.
At seven months old, Riley and Presley received the transplants.
The day after, they each cut their first tooth.
Surgery. Chemotherapy. Bone marrow transplants. Teething. All in the same week! And through it all, they smiled.
Turning the Corner
The transplant was a success. The girls had setbacks: mucositis so painful, they couldn’t swallow. Nasogastric tubes were placed. They both developed excess pericardium fluid that needed draining – twice. Overnight stays in the ICU.
At nine months, Presley and Riley left the hospital to live at the Ronald McDonald House nearby. On December 22, they were released to go home for the first time ever – just in time for their first Christmas.
Months of medicines, labs, therapies and hospitalizations followed. Little by little, life got better.
Today the girls are healthy, active toddlers. They’re curious, silly, happy and unstoppable. Their care team continues to monitor their progress, and they have every expectation of a long, healthy and normal life.
To Be Tough Like Them
ToughBaby is inspired by Presley and Riley – and all the strong, amazing kids everywhere who stir us to be better. They’re infants with birth defects. Toddlers with illness. Young kids with cancer. Teens with depression and addiction.
They’re tough, inspiring fighters. They’re our super-heroes. And we want to be like them.
If these vulnerable kids can face life-and-death issues head-on, then we can surely step up and step into our big-girl panties.
If they can fight grown-up battles – as young as they are – then we can sure do the same.
We can step out of our comfort zones. Take charge of our lives. Do something meaningful.
Let’s do that. Sure, life is tough. But so are we. Let’s honor the kids who fight for their lives by doing the same with our own.
Oh – and who are Presley and Riley Olson?
They are my granddaughters.