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Living with A-T and What the Future Holds
|Dylan throwing out the first pitch at the Roadrunners game|
At the end of Dylan's life. He was confined mainly to his home and that of other family members. His parents rarely took him to public places like the store, library, church, and even doctors’ offices posed potential threats, 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.
As can only be imagined, it was heart wrenching as Dylan’s parents and family watched his decline that lead to his death in March 2010. Despite the toll it has took on his 5 ½ year old body. His intellect was 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 has incurred.
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. Before Dylan's passing, he continued to walk but tired easily and needed help with simple tasks like getting on the toilet or up to the table.
|Riley as a baby, snoozing at the pool|
For the the last 8 months of Dylan's life, his strength, appetite, and general health weakened. They did everything medically possible to extend his life and make every day as happy as they can. Despite the struggle and sorrow of Dylan's loss, the Slack family continues to maintain hope and work to save Riley's life in her personal struggle with A-T.