By MultiCare Health System
Ms. Ruby, as her mom likes to call her, was born six years ago with a condition called Pompe Disease. The progressive condition causes muscle weakness and requires weekly enzyme infusions. Her condition requires around-the-clock medical care. Ruby is on life support to help her breathe and she receives her nutrition through a feeding tube.
Ruby, her parents, and her five siblings live in Morton, Washington, which is about two hours away from Mary Bridge Children’s Hospital.
In order to be transported to Mary Bridge Children’s for her appointments, Ruby travels on a gurney provided by Basic Life Support ambulance service. During the long drive, she also relies on back-up AC power for her ventilator and heated humidification.
“If you ever have the chance to meet Ms. Ruby, you will see a bright-eyed, talkative and determined six-year-old,” Mary Bridge Children’s Complex Primary Care Pediatric Care Manager, Rhonda Fry, RN, said. “This family’s journey has been full of bumpy roads, twists, and turns that have been intertwined with glimmers of hope, determination, lots of cries, smiles, resilience, and advocacy.”
Little did the family know that another challenge was on the way in the form of wildfires.
“I was on the phone with Ruby’s mom, Kate, discussing an emergency plan in case the family needed to evacuate,” Rhonda said. “Less than an hour later, Kate called in a panic. They were on alert because of a fire about an hour away from their home and on the main road they use to travel.”
Adding to the problem, Ruby’s normal mode of transportation — an ambulance and gurney — wasn’t available due to the short notice.
To help Ruby and her family safely evacuate, Mary Bridge Children’s staff used financial support from the Helping Hands fund. Social workers and personal health partners use Helping Hands to support patients in need by providing access to prescriptions, clothing, food, transportation, and stable housing.
For Ruby’s family, this meant the funds paid for a hotel in Puyallup close to MultiCare Good Samaritan and Mary Bridge Children’s in case of a medical emergency.
During their hotel stay, Good Samaritan pharmacy staff came to Ruby’s rescue when they needed an empty IV bag for Ruby’s infusions. After calls were made, they were able to pick up one from the Good Samaritan Emergency Department with no interruption to Ruby’s regular schedule.
Because of the fast actions of the Mary Bridge Children’s team and donor support, Ruby and her family were able to safely evacuate and remain stable and healthy. They have returned to their home, which was spared from the wildfires.
Despite the scary circumstances, Kate found the silver lining during the family’s hotel stay.
“Since Ruby and I slept in the king-size bed last night, we held hands all night. It’s the first time I’ve been able to do that in a long time,” she said.