Little Boy with Rare Disease Inspired by Aang
Yesterday I read this three-part Pulitzer Award-winning article about Nicholas Volker, a then-five-year-old Wisconsin boy suffering from an extremely rare, extremely serious disease, and how the race to save his life lead to the first-ever sequencing of a patient's entire genome. Well actually 1% of it, the exons that are responsible for producing proteins. I encourage you to load the article up on the mobile device of your choice, it's quite a read.
I'm sharing it on my fandom blog because of a tidbit in Part 3 about how Nic, bald from chemotherapy and having spent over 600 days in the hospital, drew strength from the character Aang, a bald boy who battles powerful enemies. His mom played "Aang's Theme" while Nic was being injected with umbilical cord fluid. (Which seems to be a safer form of bone marrow transplant--man, I've got to remember to save mine if I ever give birth.) Nic, also a Batman fan, said he would go into the treatment as Batman and emerge as Aang. I... totally teared up at that, to tell the truth.
The only fly in this ointment is that Nic's Aang was the movie version, but it's heartwarming to know that this sick little kid was encouraged by such a great character. Now that he appears to be healthy--knock on wood--and turns seven soon, I hope Nic gets to see the original animation and enjoy his hero in a whole lot more depth.
One in a Billion: A Boy’s Life, a Medical Mystery: Part 1: A Baffling Illness
One in a Billion: A Boy’s Life, a Medical Mystery: Part 2: Sifting Through the DNA Haystack
One in a Billion: A Boy’s Life, a Medical Mystery: Part 3: Gene Insights Lead to a Risky Treatment
I'm sharing it on my fandom blog because of a tidbit in Part 3 about how Nic, bald from chemotherapy and having spent over 600 days in the hospital, drew strength from the character Aang, a bald boy who battles powerful enemies. His mom played "Aang's Theme" while Nic was being injected with umbilical cord fluid. (Which seems to be a safer form of bone marrow transplant--man, I've got to remember to save mine if I ever give birth.) Nic, also a Batman fan, said he would go into the treatment as Batman and emerge as Aang. I... totally teared up at that, to tell the truth.
The only fly in this ointment is that Nic's Aang was the movie version, but it's heartwarming to know that this sick little kid was encouraged by such a great character. Now that he appears to be healthy--knock on wood--and turns seven soon, I hope Nic gets to see the original animation and enjoy his hero in a whole lot more depth.
One in a Billion: A Boy’s Life, a Medical Mystery: Part 1: A Baffling Illness
One in a Billion: A Boy’s Life, a Medical Mystery: Part 2: Sifting Through the DNA Haystack
One in a Billion: A Boy’s Life, a Medical Mystery: Part 3: Gene Insights Lead to a Risky Treatment