Ella was welcomed into her family in the early summer days of 2009. She came with some resistance but with her chin up – a reoccurring theme in the years to come for Ella and her family.
The first time Krista held Ella she was overcome with joy
but had a lingering concern for her beautiful new child. Her motherly intuition had been tipped off
when she first gazed at Ella’s gorgeous almond eyes. Doctors and nurses continually told the family
that Ella was a perfectly healthy newborn but her struggles couldn’t help but
be noticed that she was showing signs of Down Sydrome.
Finally on day three of their prolonged hospital stay,
Ella’s doctor admitted to believing there was a possibility of Down Syndrome
and referred them to a specialist for further testing.
As a parent it breaks your heart when your doubts about your
child are confirmed. All you want is
somebody to tell you that there is nothing to worry about and that your child is
perfectly healthy. For Ella’s family,
their hearts were heavy when the doctor started talking about specialist
appointments, possibilities of heart abnormalities, trips to Children’s
Hospital, and everything that comes along with a diagnosis.
A visit to Children’s Hospital was not the answer. The genetic specialist told the family that
usually after the physical examination there is a 90% yes or no confirmation
but Ella’s case still left the doctors uncertain. Ella had the typical folded over ears, palmer
crease, and of course, her eyes but she had better muscle tone, was more alert,
and there was no history of genetic disorders in the family. Ella had to undergo chromosome testing, which
finally confirmed that she had an extra chromosome resulting in Down Sydnrome or
Trisomy 21. Since children with Trisomy 21 carry an extra copy of the 21st
chromosome, it means that they have an excess of any genetic material contained
in it. For this reason, children often have a flattened bridge, congenital
heart defects, physical and intellectual developmental delays, along with many
other potential health risks. It was discovered very early in Ella’s life that
she had a hole in her heart. Thankfully, it was not too debilitating and would
most likely close on its own (which it did).
It hasn’t been easy, but four-year-old Ella carries the
courage many of us can only hope for in her healed little heart. She has the
resilience that only comes through a determination to overcome adversity and
stereotypes. She has people who believe in her, give her the opportunity to
fulfill her potential, and who not only want her to succeed but who know she
will succeed. And when you have a child with special needs they are not
to be taken for granted. They are a rarity in the world that focuses on the
ability instead of the disability. It is because of encouragement from her
cheerleaders and her own hard work that Ella is able to live a very full life.
She goes to preschool, has friends, dances, runs, makes art, sings, laughs and
fights with her older brother. She never
stops playing in the midst of her struggles.
In September, Ella will start kindergarten – at a French Immersion
school.
Ella is one amazingly inspiring Super Bean that we can all learn from!
Ella is one amazingly inspiring Super Bean that we can all learn from!
