At the age of 6, Los Angeles boy Dylan Siegel decided he wanted to help his best friend, Jonah Pournazarian, who had a rare genetic disorder affecting his liver.
asserted
who → decide → liver
When his mother suggested that he could raise money through a lemonade stand, Dylan had another idea.
uncertain
Dylan → suggest → idea
He wanted to write a book.
asserted
He → want → book
The result was a 14-page illustrated booklet called Chocolate Bar.
asserted
result → illustrate → ?
According to Jewish Journal, Dylan used the phrase “Chocolate Bar” to describe things he thought were great, including trips to Disneyland, the swimming pool, the aquarium and the bowling alley.
uncertain
he → accord → Disneyland
He ended the book with a line about helping his friends.
asserted
He → end → friends
Dylan did not stop with writing the book.
asserted
Dylan → stop → book
He worked with his parents to produce copies and started selling them to raise money for research into glycogen storage disease type 1B, the disorder affecting Jonah.
asserted
He → work → Jonah
The book was sold for $20, while chocolate bars carrying the same design were also sold as part of the fundraising effort.
asserted
bars → sell → effort
The project began on a small scale in late 2012.
asserted
project → begin → 2012
Dylan and Jonah sold the books and chocolate bars at their school’s Mitzvah Day, where the effort raised about $7,000 for GSD research.
asserted
effort → sell → research
As more people heard about the project through book fairs and television reports, the number of copies sold grew.
asserted
number → hear → copies
By December 2014, Chocolate Bar had raised $1 million for research into the disease.
asserted
Bar → raise → disease
Jonah's rare liver disorder
Jonah was one of a very small number of children living with glycogen storage disease type 1B. The Jewish Journal reported in January 2013 that fewer than 100 cases of type 1B had been identified in the United States at that time.
asserted
cases → live → time
Glycogen storage disease affects the way the body handles glycogen, the stored form of glucose.
asserted
body → affect → glucose
Normally, the body breaks down glycogen and converts it into energy.
asserted
body → break → energy
This process depends on enzymes.
asserted
process → depend → enzymes
In people with GSD, problems with these enzymes can slow down or stop the process.
asserted
problems → slow → process
Type 1B is one of seven types that primarily affect the liver.
asserted
that → affect → liver
In Jonah’s case, glucose was stored in his liver and could not properly get out, according to his doctor.
uncertain
glucose → store → doctor
The condition had a major effect on Jonah from the time he was born.
asserted
he → have → time
He weighed 4 pounds at birth and was frequently ill.
asserted
He → weigh → birth
He had very low or barely detectable sugar and white blood cell counts, suffered from severe diarrhoea and sometimes woke up covered in sweat.
asserted
He → have → sweat
His family later sought treatment from Dr David A. Weinstein, a paediatric endocrinologist at the University of Florida, Gainesville, who was working on GSD treatment and research.
asserted
who → seek → treatment
Medical consultations required Jonah and his family to travel to Florida.
asserted
consultations → require → Florida
Treatment meant living by the clock
asserted
Treatment → mean → clock
By the time the Jewish Journal wrote about Jonah in 2013, his treatment required regular doses of cornstarch.
asserted
treatment → write → cornstarch
The treatment had to be given through a surgically implanted feeding tube every three to four hours, including during the night.
asserted
treatment → have → night
Jonah’s mother, Lora Pournazarian, described the routine saying, “We live by the clock.”
asserted
We → describe → clock
She and her husband, Rabin Pournazarian, kept two alarm clocks in their bedroom, both set for 3am, so they could wake up and give Jonah his early-morning dose.
uncertain
they → keep → dose
Missing a feeding could have serious consequences.
uncertain
Missing → miss → consequences
The Jewish Journal reported that the consequences could range from a short hospital stay to death.
uncertain
consequences → report → death
Jonah’s parents also tried to ensure that the disease did not stop him from living as normally as possible.
asserted
disease → try → him
During the 2013 report, he was described as playing Monopoly with a friend at home.
asserted
he → describe → home
His mother said the family did not describe him as sick or not normal.
asserted
family → say → him
At school, his classmates had also adjusted to his medical needs.
asserted
classmates → adjust → needs
A medical aide was present with him full time and administered frequent blood tests.
asserted
aide → administer → tests
Dylan turned friendship into fundraising
Dylan’s parents, Debra and David Siegel, were friends of Jonah’s parents and had already been involved in the Jonah Pournazarian Fund to Support Glycogen Storage Disease 1B research.
asserted
parents → turn → research
The fund had raised $410,000 by January 2013.
asserted
fund → raise → January
Dylan wanted to contribute in his own way.
asserted
Dylan → want → way
…and 21 more, not listed.
The Aporia
