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Living Rare

Enzyvant Stories | February 2021

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The Journey to Treatment for Kids with Immunodeficiencies

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Children with life-threatening medical conditions, including primary immunodeficiencies sometimes must seek treatment at specialized children’s hospitals far from home. Families may have to travel for many hours and miles. In addition to the stress of the journey, these families need accommodations so they can be with their children during days or weeks of inpatient care. 

Isolation and social distancing due to COVID-19 has many people dreaming of travels beyond the backyard or neighborhood park. The confines of quarantine have reminded us of the fun of childhood car trips and have us looking forward to a time when we can again have these shared experiences with our own children. The realities of cranky kids and back-seat bickering is eclipsed by the reminders of great adventures together and the stories that come along with them.

What happens when travel is essential for
an immunodeficient child to receive needed
treatment many miles away?

For children who have a primary immunodeficiency, even a common cold can be deadly and ongoing infection control measures are critical for the family. Even a parent’s trip to the grocery store requires planning and great care to avoid bringing any germs whatsoever into the home. Daily life for these families involves masks, gowns, gloves, hand-washing, sanitizing and isolation. Travel for recreation is virtually impossible. Essential travel, such as a long journey to a specialized children’s hospital for needed treatment, presents so many more infection risks than a simple daily errand. It is a complicated process that adds additional burdens to families already facing tremendous stress and anxiety.

Many families do not have the financial resources or insurance needed to fly their immunocompromised children on private medical jets or air ambulances to hospitals far from home.

Commercial airplanes, airports, passenger trains, busses and stations pack many people into confined spaces that may present too high of a risk of spreading germs to kids who are immunodeficient. Flying commercially or taking a train or bus to treatment often isn’t an acceptable option for families.

Cars may be the best available choice for families traveling over long distances because there is some isolation from other people and related infection risks. Car travel still presents challenges for the parents who must balance needed stops for gas and food while keeping their child safe and isolated in the vehicle throughout the journey. The normal supportive medical care that parents provide at home must take place on the road. The family vehicle becomes a long-haul ambulance transporting a very sick child to the hospital.

Children who have little to no functioning immune system require a lot of support, equipment, and supplies in their daily care and all of this must come along with them on a long journey to the hospital.

The uncertainty involved in the treatment journey goes way beyond transportation, packing for the trip, or how to provide supportive care throughout. There are long lists of unknowns about what to expect once they arrive at the hospitals and what will happen throughout days or weeks of treatment. The lists of fears can be even longer as families experience the economic and emotional burdens that come with an extended and intensive pediatric hospital stay.

No family facing the terrifying journey of a life-threatening childhood illness should have to go through it alone.  Advocacy and support organizations have an important role in helping families face this journey. These organizations provide a comforting community of volunteers and other families that give crucial support, sharing, and encouragement to help families stay strong and stay together during the difficult treatment journey.

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