Slack Family

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Our story...

Ryan and Stephanie Slack had a fairly typical story. They fell in love, married and started a family.

The birth of their first child, Dylan, was celebrated with all the happiness and excitement that a healthy baby boy brings into the lives of first time parents and grandparents who like countless families before them, never cease to be amazed how much they can love one little person.

Dylan spent the first two years of his life with the mundane sniffles and sneezes that might cause his parents a few fitful nights of sleep, but little cause for concern.

As first indicators of his ensuing disease began to emerge there still seemed little to be overly anxious about and no precedent for alarm. But as the months passed and Dylan struggled to return to the same smiley and joking little boy as before, his physician ordered blood work to find more concrete answers. This was the turning point for the Slacks from “a fairly typical story”.

Dylan’s results came back with an extremely low white blood cell count, and what followed was over a year of testing, specialists, and hours on the phone and internet trying to find answers.
Dylan was finally diagnosed at age four with Ataxia-telangiectasia, or A-T, an incurable and degenerative disease with an average life expectancy of 25. A-T is an extremely rare recessive genetic disease wherein both parents must be carriers and most likely never exhibit any symptoms. In an instance where both parents are carriers, they still only have a 25 percent likelihood of having a child affected with A-T.

Relieved in many ways to finally have an answer to the mysterious ailment robbing their son of his health and strength, but devastated by the prognosis, Ryan and Stephanie next had to reconcile themselves to the fact that the child which Stephanie was already carrying could also be at risk.

Several months later when Riley Slack was born she was a beautiful and healthy baby, just like her brother. Also, just like her brother, it was determined upon genetic testing that she had A-T.

The year before Dylan's passing was especially trying on his little body, and by the same turn, his family. He was hospitalized for a total of 27 days in 2009 including a week’s stay at Primary Children’s in February for inter-stitial lung disease, and again in December for surgery and another week long stay. This last surgery was to perform four biopsies looking for causes to his progressively worsening gastro-intestinal problems. These complications caused drastic weightloss and he currently is down to 27 pounds from his previous 35 pounds. As a result, he was placed on a gluten-free and low-sodium diet, which he was not a big fan of, and he also is fed through a feeding tube each night.

While Dylan was in Kindergarten, the days became too exhausting for his body, even with rest periods to lie on the couch in his kindergarten classroom. When his health problems and fleeting strength escalated, his parents made the difficult choice to take him out of public school in December 2009. Dylan’s teacher and classmates rallied around their friend and at Christmas they sent home a huge basket filled with chocolate, handwritten notes from all the kids, a quilt, and toys. His teacher continued to send home projects and work with the Slacks to keep Dylan busy and connected while he was out of school.

Watching Dylan withdraw from school, church, jumping on the trampoline, and even playing video games, was one of the most sorrowful concessions of his disease. It was even more painful knowing that Dylan’s mind was sharp and active, and unaffected by the disease unlike his body which did not allow him to participate in the activities that shape other children’s lives.

Despite their vigilant efforts to keep Dylan out of harm’s way, give him the best preventive care possible, and some semblance of a normal childhood, Dylan Ryan Slack passed away March 19, 2010 in Salt Lake City after a valiant fight with his life-long illness.

The Slacks said their wish for Dylan was that he enjoyed the time he had left on this earth. Dylan will be missed deeply.

Riley is still the picture of health and happiness. It is hard to imagine as she climbs, wrestles, kisses, hugs, and teases that her life could hold anything but happiness. It’s hard to know as she eats everything put in front of her and toddles around exploring everything she shouldn't, whether this vigor and energy will endure.

Dylan spent one day every month hospitalized for immunoglobulin IV treatments. Riley receives a smaller dosage and her mother is able to administer treatment at home with two small needles and a pump. Although, it is a relief both emotionally and financially to do the treatments at home, it is a major challenge trying to keep Riley distracted from pulling out the needles for 20 minutes until her treatment is completed.

But as her parents, family, and friends suffered to watched Dylan’s body fight through the inevitable deterioration, they ached for what possibly lies ahead for their precious daughter, granddaughter, niece, and sister.