Wednesday, May 3, 2017

Ashton's Speech for the Natalie's Wish Event 2017

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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