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.
Today at 15-months-old, 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. But as her parents, family, and friends suffer to watch Dylan’s body fight through the inevitable deterioration, they can’t help but ache for what possibly lies ahead for their precious daughter, granddaughter, niece, and sister.
Dylan and Riley’s Brave Fight. Today, Dylan and Riley are 2 of the 3 children in Utah who are battling A-T and around 400 nationwide. This daily battle means lack of muscle control, immunodeficiency that causes continual respiratory infections, and staggering odds of developing cancer – they are1000 times more likely to develop some form of lymphoma and leukemia.
Dylan spends 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.
Despite vigilant efforts to keep Dylan out of harm’s way, give him the best preventive care possible, and some semblance of a normal childhood, his disease presents staggering odds. This year has been 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 have caused drastic weightloss and he currently is down to 27 pounds from his previous 35 pounds. As a result, he has been placed on a gluten-free and low-sodium diet, which he is not a big fan of, and he also is fed through a feeding tube each night.
With increasing health problems and fleeting strength, his parents made the difficult choice to take him out of public school in December 2009. Even with rest periods to lie on the couch in his kindergarten classroom, the days became too exhausting for his body. 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 continues to send home projects and work with the Slacks to keep Dylan busy and connected.
Watching Dylan withdraw from school, church, jumping on the trampoline, and even playing video games, has been one of the most sorrowful concessions of his disease. It’s even more painful knowing that Dylan’s mind is sharp and active, and unaffected by the disease unlike his body which for now does not allow him to participate in the activities that shape other children’s lives. The Slacks said their wish for him is that he'll be able to enjoy whatever time he has left on this earth, and that his health will improve to the point that he'll have the energy to do whatever he wants.
Living with A-T and What the Future Holds
Currently, Dylan is confined mainly to his home and that of other family members. His parents can rarely take him to public places like the store, library, church, and even doctors’ offices pose a potential threat particularly during high risk cold and flu season. Although, Riley’s disease has yet to fully emerge, her white blood count levels are already low, and her interactions are limited since a simple cold could be a life-threatening factor for her or Dylan.
As can only be imagined, it is heart wrenching as Dylan’s parents and family watch his decline which despite the toll it has taken on his 5 ½ year old body has left his intellect sharp and ever aware of the pain and frustration his disease and treatment inflict. Despite, their own worry, fatigue, and pain, Ryan and Stephanie go beyond the limits of imaginable strength to remain positive, joyful and grateful. Ryan works full-time and Stephanie part-time with babysitting help from grandparents to support their family and meet the major medical bills their children’s health incurs.
The unrelenting nature of A-T and its continual attack on the body results in most children wheel-chair bound by age 10 and not because of lack of strength but lack of muscle control. Dylan continues to walk but tires easily and needs help with simple tasks like getting on the toilet or up to the table. For the past six months, his strength, appetite, and general health have weakened, but the Slack family continues to do everything medically possible to extend his life and make every day as happy as they can.
The Dylan & Riley Slack Fund
The fact of the matter is that Dylan and Riley are suffering from a rare, incurable genetic disease which modern medicine can currently only offer treatment to partially alleviate symptoms but can not offer a cure or even a way to slow progression. Research and funding are scarce due mainly to the fact that A-T is a rare, difficult to diagnose, ‘orphan’ disease, meaning it is not associated or caused by any other factors. Thus, there is little outside aid or support available for parents or patients with A-T.
Up to this point the Slacks who have a strong sense of self-reliance have waged their private battle with the support of a loving family and covered all medical costs with their own income. As Dylan’s declining health has incurred ever increasing medical expenses and Riley is nearing age two when symptoms or her disease will emerge more rapidly, the Slacks have consented to allow family and friends to tell their story and reach out to the community at large for their sympathy and support. Part of that process has been setting up an account for donations to help the family manage the mounting cost of medical bills. Donations can be made to the Dylan & Riley Slack Fund at America First Credit Union located at 1189 East 700 South in St. George or by calling 435-688-3800. The love you hold for your own children whether as a parent, grandparent, friend or neighbor can give you some insight into the unimaginable prospect of watching someone so young and innocent battling against so many obstacles and the unrelenting prognosis of an incurable, degenerative disease. As friends and family of Ryan, Stephanie, Dylan, and Riley, we ask you to help this courageous and amazing family with your monetary donations in the fight of their lives.