Beautiful Lizzie
Marfanoid-progeriod-lipodystrophy
syndrome!!!
“Such a complex
name,” said the mother.
“Yes mother, the name
is as complex as its symptoms,” the daughter who was studying in Class VIII
added.
It was a family of
four. The mother and her three daughters - young one, younger one and the
youngest one! The father had left long back; no one was sure where! The family
fought hard… to live. They needed something that would give them the strength…
to live. That is why their “Mother Courage” had devised a strategy. Every week
one of them had to tell a story, at bed time. And there was a condition – it
had to be a true story that would inspire!
This week it was the
turn of the youngest daughter and she had planned the story of Beautiful
Lizzie. When her teacher had told the story in their class, the youngest
daughter had tears in her eyes. Strangely, at the end of the story she felt
stronger than ever!
“Elizabeth Ann
Velasquez was born on March 13, 1989 with an extremely rare congenital disease
called the Marfanoid-progeriod-lipodystrophy syndrome,” continued the story
teller. “Born prematurely, her birth weight was only 1.219 kilograms. Among
other symptoms, the disease prevents the patient from accumulating body fat and
gaining weight,” the story teller added more information.
“Then, what is her
weight now?” asked the young daughter. She always asked questions; it was her
habit.
“Elizabeth Ann
Velasquez, we will call her Lizzie,” clarified the story teller “is now 29 years
old and her body weight coincidentally is just 29 kilos” (64 lbs). She has 0%
body fat and due to her disease she is medically unable to gain weight which is
a hallmark of her rare disorder!”
The story teller
waited for the information to sink in. She wanted the three listeners to
imagine a lean, skinny woman with absolutely no body fat.
Mother had other doubts!
“Who are Lizzie’s parents? Do they have other children? Are they normal?” she
asked in one breath.
“Mother, her parents
are Rita and Guadalupe Velasquez, they have two more children, and yes the two
of them are normal,” the youngest daughter had all the necessary information.
The three children
could clearly hear their mother heave a sigh of relief!
“What is wrong with
being just twenty nine kilos; isn’t it good to be slim and lean?” asked the
younger daughter. She had spoken for the first time; but she was the cleverest!
“No akka, Lizzie’s condition is very rare.
Due to this non-terminal genetic disorder, she is blind in the right eye and
vision impaired in her left eye. Due to the disorder her body needs 5,000 to
8000 calories daily forcing Lizzie to eat small portions of snacks and meals at
least 60 times a day. You won’t believe me, but the fact is that, she has to
eat every fifteen minutes in order to survive”
“My God,” the family
gasped in unison.
“There is a problem
with the aortic valve in her heart and there is no way to know when her heart might
dilate to the point of abruptly rupturing. It’s a serious disorder, and in
fact, there are only two persons in this world with this disease – Lizzie and
Abby Solomon. At 29, she has wrinkled skin, not much fat, a large head, a face
that looks aged and visible veins in the scalp” the story teller her given a complete
picture of Lizzie’s disorder.
The family of four
was silent. They could all imagine that Lizzie was ‘ugly.’ But the youngest daughter
was narrating the story of beautiful Lizzie!
“It was a painful
childhood. Lizzie’s conditions resulted in ‘a tonne’ of bullying during her
childhood. Her high school days were traumatic. But it was a video posted on
YouTube in 2006 that was the most painful but decisive moment in her life” the
story teller continued softly.
The other three came
closer to the story teller. They itched to hear about that moment.
“In 2006, when Lizzie
was just seventeen she stumbled upon a video of herself entitled ‘the ugliest
woman in the world.’ It was bullying, especially online bullying at its nadir”
the story teller said expecting a question on online bullying.
But, no questions;
she could continue.
“It was after this
video that Lizzie decided to make her life beautiful. Spurred by insults about
her appearance, Lizzie dedicated her life to talking openly about her extremely
rare genetic disorder. She lashed out against bullying. Very soon, Lizzie got
noted in Texas as a motivational speaker and anti-bullying campaigner” the
story teller was packing more and more information.
The younger daughter
who was in the mother’s lap till now got up; she had a question.
“You said she was
bullied in high school. Did she stop her studies after that” asked the younger
one. She always asked sensible questions.
“Yes akka, Lizzie studied at the Texas State
University until 2012 and has a degree with a major in Communication Studies”
the story teller clarified.
The family waited -
for their story teller to continue.
“From speaking to
writing; Lizzie took a new path,” continued the story teller. “Her first book,
co-authored with her mother Rita is an autobiography entitled Lizzie Beautiful: The Lizzie Velasquez Story
(2010). In Be Beautiful: Be You
(2012) she shares her journey to “discover what truly makes us beautiful and
teaches readers to recognize their unique gifts and blessings. The next book Choosing Happiness (2014) talks about
some of the obstacles she faced and how she “learned the importance of choosing
to be happy when it is all too easy to give up” completed the story teller even
as she took a glass of water from the bedside table.
“Three books!” gasped
the mother
“No mother, there is
one more. In 2017 she published her latest book Dare to be Kind in which she writes about the importance of being
kind, gleaned from her first-hand experience being bullied personally and
online,” the daughter told the mother.
“Did she get married”
the mother was curious. The children knew that mother would ask this question
at some point. Marriages interested her, despite the failure of her own!
“No mother, she has
her small white, fluffy dog Ollie with her. She has outrageous optimism with
her. She has God with her. But no, she is not married,” the daughter answered.
The mother seemed unhappy!
“From a spiral of
suicidal depression, from being addicted to anxiety medication Lizzie has now
become a celebrity who travels three weeks a month speaking against bullying,
motivating people battling negativity, asking people to stop staring and start
learning, and above all trying to make her life beautiful!” added the story
teller feeling satisfied that she was using the right words.
“This,
Lizzie…beautiful Lizzie is a real heroine!” said the young sister. Being the
eldest, she had kept quiet till now.
“Yes, akka, in fact, there has been a
documentary film on her with the title The
Brave Heart: The Lizzie Velasquez Story (2015)” the youngest sister
answered.
“Lizzie now lives in
her home in Austin, Texas. Her life, so far, has been normal yet surreal; great
but scary, bullied yet beautiful, syndrome-ridden but strong, uncertain but
steady,” said the story teller deliberately bringing in a series of
contradictions. She had to finish the story.
“What is beauty?”
started to story teller. “What we see from the outside? What the media or the
entertainment business project? What the beauty pageants measure out? What the commercial
cosmetic market mechanizes? No! Is beauty something so ephemeral that it
ultimately decomposes to form a lump of mud or a heap of ash? No, beauty is
what we do; what lives even after we are no more... No, beauty is not the
person, beauty is the personality” the story teller was now speaking as if
there was no one else in the room. Almost as if it were a soliloquy that she
was rehearsing for a school drama!
“Is she the ugliest
woman in the world?” asked the story teller. Two drops of tears were waiting to
roll down her cheeks.
The three listeners
held her hand, even as the mother wiped the story teller’s tears. They all
answered in one voice, their voices choked – no dear, she is Beautiful Lizzie!”
Rubina III BA HPE.
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