Here are the full remarks that Ashton gave at this year's Natalie's Wish Event:
A few weeks ago my four-year-old,
Lars, who has cystinosis, got home from pre-school and asked me “Mom, did you
know that there are kids in my class who don’t swallow pills? Ever?!” With a huge
smile on his face he asked me when he could stop taking medicine. It hurt my heart to tell him that the 16 big blue
pills he swallows every day are essential to keeping his body healthy.
Lars has a seven-year-old brother
who has charted the cystinosis path before him.
Samuel was diagnosed with cystinosis when he was just a year old. Lars was only two when he watched his cool
older brother swallow over 20 pills each morning before school. Lars was determined to be like his brother and
learn to swallow pills. He started practicing
with mini m&m’s and never gave up.
Before long he was swallowing 5 cystagon pills every six hours.
Some days the boys make it look
easy but it never really is. My husband
and I make up crazy stories and pretend pills are dinosaur eggs and Lars is the
T-rex coming to eat them. If that
doesn’t work, we’ll pretend that the blue pills contain super powers and the
white pills are alligator teeth. Other times
I will sit with the boys for 30 minutes coaching, encouraging, begging and sometimes
bribing them to take their medicine on schedule. Some days are especially hard
because their stomachs are aching, they have already thrown up once or twice,
and they are just plain tired of swallowing pills.
I wish that the pills they take
each day could make them feel better immediately. Then they would more easily understand how
important the medicine is to keep them healthy. Unfortunately, every medication
has side effects, and more often than not the pills make the boys feel worse.
Take potassium, for example. Because children with cystinosis lose so much
potassium in their urine, we have to give Sam enormous doses to keep his
potassium levels in the normal range. Each
month I pick up a grocery bag filled with eight large bottles of potassium chloride
from the Primary Children’s Hospital pharmacy.
More than once the pharmacy technician has made me wait while a
concerned pharmacist calls our nephrologist to confirm that Sam really takes
the absurd amount of potassium prescribed for him.
The potassium supplements upset
Sam’s stomach. He has thrown up many
times at school but tells me it’s okay because it’s almost always underneath
the playground where nobody can see. I
used to assure him that kids don’t remember those things until I introduced him
to our new neighbor who said, “Yeah, I know him. He’s the kid who threw up in the lunchroom.”
Some of my hardest moments as a
mother are when my children come home from school and tell me about an incident
where a kid has made fun of them because of the way they smell. Cysteamine
produces a rotten egg smell that I’ve had other kids describe to me as “fishy,”
“sour milk,” “dirty,” and my favorite, “Mmmmm, like spaghetti dinner.” Though most kids mean no harm, it makes me
sad to know that my kids have to experience this scrutiny regularly. I wish kids could see how strong and brave
Sam and Lars truly are for battling cystinosis every day.
When Sam was first diagnosed
almost seven years ago, some people told us to never use the word “cure,”
because it was unrealistic and would spread false hope. After attending our first Cystinosis Research
Foundation conference, however, we were inspired by the dedication and perseverance
of the Stack family and Dr. Stephanie Cherqui, and we left filled with hope
that we really can beat this disease.
We are so grateful to Nancy and
Jeff Stack, and to all of you, who generously support this cause. It is your encouragement and love that I
remember in moments when I feel like this disease is a burden too heavy to
bear. I hope that one day I will be able
to look at my son Lars and tell him he doesn’t have to take pills anymore. Thank you.
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