Three Year Old with Rare Disease Transported from Vermont to Specialized Medical Care

When 3 1/2 year old Christian was diagnosed with a rare disease, his family immediately worried about how they would access the medical care he needed to assist with this diagnosis. Christian suffers from a rare Genetic Disorder called Leukodystrophy, which is a group of rare, genetic disorders that affect the white matter of the brain. Christian’s diagnosis requires him to travel not only to Boston Children’s Hospital for specialized medical care but also Philadelphia Children’s Hospital to meet with a medical team. Since his mother’s first call in 2020, our mission/flight coordinators have scheduled more than 60 free air & ground missions so Christian can access the care he needs without his mom having to worry about how they will get there.

A lovely note from Christian’s mother:
Another great flight yesterday. Thank you to our amazing pilots Gary and Nai and his co pilot!  And our great earth angel, Sister Mary!

You ALL take so much stress off families navigating medical life. It makes a huge difference. We are so thankful for you all and can never express in words our gratitude. Because of you I’m able to travel with my complex kiddo, connect him with amazing doctors and get home in time to also be there for my other kiddo.

Missions for Christian and his mom are already booked into late August so they don’t have to worry about their travel arrangements and focus on Christian’s care.

We are able to support patients like Christian who have rare and ultra-rare medical diagnoses with generous grants from the Alexion Charitable Foundation. And support of individuals, like you, is also vital. Together we are making the “Impossible, Possible” for patients and families in need of accessing life-saving medical care.

As with all of our patients, Christian and his family will always have a place in our heart and will remain a part of the Angel Flight NE extended family. We assured his mom that we are here for him as long and as often as he needs our assistance to access the vital care he needs to battle his rare condition.

Mission/Flight requests – like Christian’s – happen daily and we are privileged to have the opportunity to not only fly but deeply care for all who turn to us for help at difficult times in their lives.  We are here for him for as long and as often as he needs our help and to ensure the best possible outcome. Please keep Christian and all of our patients in your thoughts and prayers.

This month we are proudly celebrating our 27th year of service having scheduled over 108,000 flights for patients who have traveled  more than 15 million miles to 750+ medical facilities throughout the United States since our founding in 1996.

Thank You and God Bless You for your support and belief in our healing mission.

With your help, we can ensure that distance is never an obstacle for patients, like Christian and the thousands of others we assist yearly.

Warmest regards,
Fr. Larry & the AFNE Staff

Posted Under: Thankful Thursday

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