How an AI expert took on his toughest project ever: writing code to save his son’s life

Very proud of my son-in law and daughter. A recent article in STAT narrates their struggle with my grandson, Bertrand (my little bear).  After a few weeks at the hospital, I was told that Bertrand had drastically deteriorated and was dying.  I felt powerless as I was remotely located giving lectures in Costa Rica. The news tore me apart.  I was told that the attending physicians were planning on discharging him to his home and curtailing all therapeutic efforts. It was thought that hospice care was the most humane thing to do as Bertrand (my little bear) was suffering considerably and his physicians had given up on him.  Fortunately,this was not the case with his parents, who never gave up.  Time and time again my little bear has challenged the odds and beaten expectations. In a blog in cortical chauvinism (Why do bad things happen to good people?) I stated that:

A person facing a tremendous life adversity could not be blamed for cowering and blaming God. However, my daughter and son-in-law have used all of their emotions to make Bertrand’s life be a positive. They created a foundation, established research, and collected a cohort of similarly affected individuals that is now being studied by the NIH. They decided that Bertrand’s life had a purpose.

In all of our struggles my family feels eternally thankful to have met so many wonderful and supportive people. Many of them have had their own cross to bear but they have done so gracefully and with humanity. In a passage from the Bible the disciples asked Jesus about a man who was born blind, and Jesus answered, “so that the works of God might be displayed in him.” Indeed Bertrand has been a miracle that has been loaned to us. And we all feel grateful for it.

The STAT article written by Casey Ross has video portions of my family.  Cristina (Kiki) is my oldest daughter.  At one point, Cristina was exhausted. She has 2 other young children to raise and Bertrand required a lot of attention.  My second oldest daughter moved to Salt Lake City to be of help.  Still, they required more help and then my youngest daughter moved with them.  A well known African proverb goes as follows, «It takes  a village to raise a child».  This really describes what happened in our family.

The STAT article goes as follows:

BIRMINGHAM, Ala. — Cristina Might drew close to her son. He was listless and groggy after weeks of battling a puzzling illness that had filled his lungs with fluid and, hours earlier, stopped his breathing entirely. A code team had rushed to Buddy’s bedside and jolted him back to life, but now the 11-year-old with the broad smile was gray, his eyes unable to focus. His mom leaned nearer still. It was time to say goodbye.

But Cristina’s words to her son, a brown-eyed boy who loved dolphins and his aquarium, offered no hint of her desperation: “I was telling him it was all going to be OK, that his fishies couldn’t wait to see him again and that he had to hurry up and come home.”

Somehow, Buddy made it through that night this past May, allowing doctors at Children’s Hospital of Alabama to insert a tube to drain his lungs. His illness had caused a frightening cascade of symptoms: a yellowish substance in his bones and a bulging abdomen, on top of the deluge of fluid. After weeks in and out of the hospital, no one had come up with a diagnosis, but the drainage tube would hopefully give them a few more days to find an answer…..

Those interested in reading the whole article can click on the link provided.

Thank you for your prayers and never ending support.

7 Respuestas a “How an AI expert took on his toughest project ever: writing code to save his son’s life

    • I think with Bertrand we have all been learning about NGLY1. He was the first case described in the world literature. Bertrand has had to be a fighter in order to survive ever since he was borne. All of the family contribute as they can.

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