Presley's wish to walk helps her family see what's possible
Presley has more doctors than hours in a day.
“At three month old, she began to get sick and we noticed her lips were turning blue at different points. We thought it might be asthma, but she kept getting sick. We took her to the ER where they told us she wasn’t getting enough oxygen. When she was only seven months old, she was taken by helicopter transport and rushed into emergency surgery for a tracheostomy and feeding tube,” said Katrina, Presley’s mother.
That trauma was the family’s introduction to Presley’s diagnosis of a rare genetic condition that began a very scary uphill battle for Presley. But Presley continues to fight and every day, she's defied all her doctors’ odds.
“It has been one surgery after another surgery for as long as I can remember. After her eighth and most recent surgery, she developed sepsis and fought for her life in the intensive care unit for 119 days. I'm amazed my child could go through so much and survive,” said Katrina.
Presley's wish to walk is going to change her life.
Katrina
Presley's mom
In addition to her genetic condition, Presley deals with respiratory failure which makes every normal day-to-day activity risky.
"They don’t have standard prognosis plans for her,” said Katrina. “She can’t walk or talk so we have to watch for physical cues such as heart rate to monitor her moods and needs. Overall, she is a happy girl and we are carefully taking it one day at a time.”
Not strong enough to walk on her own and attached to a ventilator, Presley has limited ability to move around. When she qualified for a wish, the family dared to consider the impossible.
"Doctors told us she would never be able to walk. But Make-A-Wish is for turning children’s most impossible wishes into a reality."
"We know she loves to move so we thought, “what if she wished to walk?"
Make-A-Wish Arizona worked with Presley’s doctors and medical team to find a special gait trainer to fit all of her medical and personal needs. Arriving in her favorite color purple and including more than 50 custom pieces of equipment, the gait trainer safely secures Presley’s ventilator giving her the freedom to navigate around the house for the first time.
“It was amazing witnessing Presley move on her own. She’s been practicing every day and loves walking to her room by herself,” said Katrina. "Every day we get to see her do something we never thought was possible."
For Presley's nurse, Tavia Gura, those first steps meant everything.
“Watching her walk for the first time was really emotional because I get to fight for these kids and help them realize their own potential, which is why I do what I do," said Tavia, RN for Trinity Healthcare.
"Initially she would bump into things and not know how to steer, but we use this every day and she is learning how to move."
Now, Presley is working towards a goal of getting strong enough to walk around in her gait trainer for longer periods of time.
“She loves sea creatures, and we are planning to visit the aquarium for her first walking adventure,” said Katrina. “This wish has given us hope for what else could be possible in her future.”
"She’s more expressive about things she wants and it’s opened a lot of possibilities with all of her doctors. She can do this – so we start to think of other things she can possibly do on her own like breathing without her ventilator."
She gets to make a choice, which is something she’s never been able to do before. The potential this wish gives her is huge.
Tavia
Presley's nurse