Quinn Sunsanee Hardy OCT 2013
Lexie We had the
honor and privilege to be Quinn’s parents. We’ve decided to speak together. We
worked together as Quinns parents so it makes sense to speak together.
Barlow Quinn
Sunsanee Hardy was born November 28 2012.
She weighed 6 lbs. 2 ozs. We
struggled to find the perfect name for her – it wasn’t until she was almost
here that we settled on Quinn. We wanted
to honor her Thai heritage, and chose Sunsanee for her middle name – which
translates to “One who is praiseworthy”.
As she grew we developed many pet names for her – Quinny, Squish,
Tuk-Tuk, and our favorite, Quinsanee.
Her defiant spirit shone through early in life when Barlow tried to
dress her in the hospital, and she grabbed hold of her clothes and refused to
let go. She was small but full of vim
and vigor. As a newborn she was alert
and sweet , but also sometimes demanding.
Lexie At around 2
months, Quinn began to cry continuously and inconsolably, sometimes lasting 18
hours a day. No one could find anything
physically wrong with her, and it was believed she had colic and would improve
over time. Just before she turned 4
months old, she lost the ability to breastfeed or suck from a bottle. It got to the point that she was being fed by
dripping milk into her mouth using a syringe.
She had stopped growing at an expected rate, and her head circumference
was abnormally small. She was admitted
to Seattle Children’s Hospital, where she received a feeding tube that went in
her nose down to her stomach. An MRI
showed that the white-matter in her brain was abnormal, and the Drs. Began
running tests to try and determine the cause of her leukodystrophy.
Barlow At around
6 months of age, Quinn began having seizures.
They escalated to the point where she was having a seizure every 30
minutes. Another admission to SCH, and a prescription later, the seizures
abated. After months of tests coming
back negative (some of them for truly horrible diseases), we finally received a
diagnosis of Aicardi-Goutierres Syndrome.
Not much is known about AGS because it is an extremely rare genetic
disease – there are fewer than 200 known cases worldwide. No one could tell us what to expect, and
there is no cure.
Lexie What is
known about AGS is that it is a genetic defect that affects many parts of the
body. The brain is the most severely affected. Most Children stop developing
new skills and also have some developmental regression. It affects the ability
to move, to see and to eat.
Barlow Because of
Quinn’s condition, we met several great people we would not have had the
opportunity to meet otherwise. Our eyes
were opened to the many families around us who have children with all sorts of
debilitating illnesses. We’ve learned
not to compare our children or each other, but to recognize the love between
parents and children. We’ve gained
strength from each other, cried together, and supported each other. We also were able to meet some wonderful
Drs. We were also able to meet some
wonderful Drs, nurses, and therapists.
Lexie Along with
the ability to eat, Quinn also lost most of her vision as well as the skills
she had learned and developed since birth.
We worked with the Drs. Here in Wenatchee and in Seattle to make Quinn
comfortable and to help her develop the best she could. We had weekly physical
therapy with her occupational therapist Heidi and we worked with her daily at
home. We would do stretching, work on rolling from side to side, We worked on
holding her head up and developing trunk strength, and of course we had the
dreaded tummy time. She learned to shake a rattle, grasp a ball, and roll to
her side. She learned to eat baby food
(though she didn’t always enjoy the flavor, as far as we could tell). And while these are normal skills for most babies,
they were huge accomplishments for Quinn.
Barlow We have
been greatly blessed by the people at church and friends in the community as we
worked to raise Quinn. From meals to
watching McKay (our poor neglected dog) when we had to make emergency runs to
Seattle, Mayra and Mac became very good friends. We are grateful for Marin and Sarah as they
came over hold and snuggle Quinn so we could get a wink of sleep or do a much
needed load of laundry or dishes.
Lexie Shortly
before her birth, Barlow’s parents moved to the Wenatchee Valley to be near
their soon-to-arrive granddaughter, away from the waters of the Pacific which
they love. They watched Quinn when Lexie
returned to work. Grandma Toland also
came to watch Quinn for the summer. Her
grandparents doted on her, giving her lots of snuggles and kisses. They also
helped us with the through love of making her do her physical therapy and
helped with feeding her.
Barlow We had
visits from family from Utah and Wyoming and everyone who met her thought she
was sweet and lovely. It has always been so puzzling as to how a baby so cute
could have so many challenges.
Lexie In the last
month Quinn had been doing very well. She’d been making progress in her therapy.
She’d begun to transfer a ball from hand to hand. Her neck strength was
improving. She was doing better with her tummy time. She had not had a seizure
for over 4 weeks.
Barlow A few days
ago Quinn had begun to have a hard time keeping her food down. We all thought she had a stomach flu. None of
us, not her doctors, or her family suspected hear heart was failing. She passed
away on OCT 25th at 12:37
Lexie We’ve told
you a little about Quinn’s life, but now we’d like to tell you about Quinn
herself. Quinn loved to be touched and held. She was instantly comforted by
being snuggled by her loved ones. She loved to be sung to and to hear stories.
When we were riding some place in the car she would cry in her car seat not
understanding why she wasn’t been held, we could sing to her and she would calm
down. She had eclectic taste in music she enjoyed everything from Metallica to
the Beatles.
Barlow :During
her therapy she would cry and protest when it got difficult or she had to work
hard. Much like we all do when we have to exercise. She would often close her
eyes as though she were asleep to avoid continuing. It’s almost like she was
pretending to be asleep so we would stop therapy. She had difficulty with hand control, but she
would somehow manage to reach up and
grab my beard.
Lexie: Barlow
likes to tease. I was grateful when we got Mckay and he had someone else to
tickle and tease. And Both Mckay and I were grateful when Quinn came along and
Barlow’s attention went to tickling and playing with Quinn.
Barlow: I would
rub her face and her head and she would make an annoyed expression. It was like
she was saying “ Ahw… dad!” At first she
didn’t really appreciate it, but she seemed to grow to like it. It was a
special bond we developed. If anyone else were to try such a thing she’d cry and
protest, but she tolerated as she seemed to know it was my way of saying I love
you.
Testimonies
Barlow
Lexie
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