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 round-the-clock medical care. Ruby is on life support to help her breathe and she receives her nutrition through a feeding tube.<\/p>\n
Ruby, her parents and her five siblings live in Morton, Washington, which is about two hours away from Mary Bridge Children\u2019s Hospital.<\/p>\n
In order to be transported to Mary Bridge Children\u2019s 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.<\/p>\n
\u201cIf you ever have the chance to meet Ms. Ruby, you will see a bright-eyed, talkative and determined six year old,\u201d Mary Bridge Children\u2019s Complex Primary Care Pediatric Care Manager, Rhonda Fry, RN, says. \u201cThis family\u2019s 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.\u201d<\/p>\n
Little did the family know that another challenge was on the way in the form of wildfires.<\/p>\n
\u201cI was on the phone with Ruby\u2019s mom, Kate, discussing an emergency plan in case the family needed to evacuate,\u201d Rhonda says. \u201cLess 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.\u201d<\/p>\n
Adding to the problem, Ruby\u2019s normal mode of transportation \u2014 an ambulance and gurney \u2014 wasn\u2019t available due to the short the notice.<\/p>\n
To help Ruby and her family safely evacuate, Mary Bridge Children\u2019s 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.<\/p>\n
For Ruby\u2019s family, this meant the funds paid for a hotel in Puyallup close to MultiCare Good Samaritan and Mary Bridge Children\u2019s in case of a medical emergency.<\/p>\n
During their hotel stay, Good Samaritan pharmacy staff came to Ruby\u2019s rescue when they needed an empty IV bag for Ruby\u2019s infusions. After calls were made, they were able to pick up one from the Good Samaritan Emergency Department with no interruption to Ruby\u2019s regular schedule.<\/p>\n
Because of the fast actions of the Mary Bridge Children\u2019s 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.<\/p>\n
Despite the scary circumstances, Kate found the silver lining during the family\u2019s hotel stay.<\/p>\n
\u201cSince Ruby and I slept in the king-size bed last night, we held hands all night. It\u2019s the first time I\u2019ve been able to do that in a long time.\u201d<\/p>\n