The little boy above, Christian L. from Vermont, and his family have been impacted by his rare prognosis since August 2020 – with only 200 other known cases worldwide. Christian has H-ABC, which is a mutation in the TUBB4A gene that affects certain parts of the brain. Inheritance is autosomal dominant, but most cases are due to a new mutation occurring for the first time in a person with the condition. At 2 years old, he is unable to sit-up on his own, walk, talk or eat independently.

The University of Massachusetts Medical School, is currently conducting research for a gene therapy to stop the disease progression. The hope is once the disease is stopped; the myelin (the part of the brain affected) will start to form.

Christian & his family were referred to us through another amazing family from Vermont – Addi (age 11)  currently at Boston Children’s. Little Christian is required to travel to both Mass General & Philadelphia Children’s Hospital to meet with specialists on his diagnosis every couple months. Since that first call, we have flown Christian & his wonderful mother – Beth – over 3,300 miles for treatment. Also, with the help of the Alexion Charitable Foundation, we’re able to provide Christian & Beth safe & reliable ground support on each trip!

Beth shared the following after her travel last week with the Mission Coordination Team:
“Could you extend our deepest thanks to everyone that helped us travel to Boston? I always say thank you, but truly what you all do amazes me. I’m beyond thankful for you all. You make a difference. We can never thank you enough. Sending you so many virtual hugs and I look forward to a day when we can meet!”

Christian will need continued support as he travels for ongoing treatment, and we have assured his mother that Angel Flight NE will be here to assist them for as long and as often as they need our help. This is just one example of how our mission with the support of our amazing volunteer pilots and corporate partners, along with you, is making a difference in the lives of our patients and their families. We are truly blessed!

Please keep beautiful Christian and his family in your prayers. As with all our patients, they will forever be a part of the Angel Flight NE family. Mission/Flight requests – like Christian’s – are requested daily and we are blessed to be here for them especially during the crisis we are currently facing.

As with all of our patients, Christian is forever a part of our Angel Flight NE family. 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 Christian & his family for as long and as often as they need our help and to ensure the best possible outcome.

Thank You and God Bless You for your support and belief in our healing mission. With your help and belief in our mission, we can ensure that distance is never an obstacle for patients, like Christian.

Warmest regards,

Fr. Larry & the AFNE Staff