|Join Our Team
Growing up I loved to run. From the age of 10, I ran a 3 mile loop daily with my family. In high school that changed to track, in college to long runs with friends, and after college back to the 3 to 5 mile run with my family or later my fiancé. In January 2016, I started to have difficulty running and over the course of a year I went from running every day to being unable to walk on my own.
“Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.” Mark 11:24. Each time we went to an appointment, we had to be reminded that “we live by faith, not by sight” 2 Corinthians 5:7. On June 20, 2016, my diagnosis was confirmed. A well recognized, highly empathic, expert in the field told me that given my atypical characteristics, and rapid progression, he expected that within three months I would need to use breathing and feeding tubes. He stated that, while most patients with ALS pass away within 2 to 5 years, he expected that I had at most a year from the date of diagnosis. He said that I could expect my speech to go away, to lose my ability to chew and swallow on my own, and that eventually I will lose the ability to breathe.
“Then the Lord said, ‘Pick up your mat and walk'” John 5:8. I have not been healed yet. At this point, two separate highly known medical facilities diagnosed me with ALS. I was told that I had one to five years to live and I have watched myself lose the ability to run, walk, cut my food, type, dress myself, bathe myself, and speak in the way that I have my entire life. I came to accept that people look at me with pity when they see me struggle to walk, talk, eat, and breathe. It is an effort to go out in public, beyond my close circle of friends and family, because seeing the pity can make me sad and ashamed. That said, I know and have complete faith that I will be healed in Jesus Christ's name.
At times, when I am extra tired and struggle even more, my mother reminds me that faith can come from your family and your friends. That God put them in place to help us, so they can lift us up here when we can’t feel His hands reach. One concrete example of this is in Luke when the man’s friends literally lowered him down through the roof so that Jesus could reach him to be healed; “Then he said to him, "Rise and go; your faith has made you well (Luke 17:19)." I am so blessed with a wonderful husband, amazing family and friends who are my feet when I can’t walk, my hands when they fail me, and provide me sustenance when I am weak.
My life, like this race, has become much more of a team effort. I am no longer able to drive. So my dad has been driving me to work every day, my mom and my brother have been picking me up, and (like a child) I need to arrange for someone to take me to and from each of my daily appointments. Working out, stretching, doing my hair or makeup, these are now all group activities- and I’m blessed that my sister is expert enough to do them for us both. My aunt and college roommate have both become specialists in developing protocols, revamping my diet and recommending new supplements that provide hope that my energy can be maintained. My mother-in-law has taken on the terrifying task of dealing with my many insurance issues. My friends have all become advocates, ensuring that businesses are accessible and that I can continue to do many of the things that they do. So many people are already a part of this team.
As you read this, my prayer for you is: “May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit” Romans 15:13. I am writing this because I know that God is doing amazing things in my life and in our world. Although, I have not been healed yet-I am still going to work full time, and walking even if I do need assistance. I get a shot every morning (done by my amazing newlywed husband), take 27 pills a day, and sleep with splits holding my fingers, hands, arms, legs, feet, and teeth in place to prevent further degeneration and pain. None of this is how we pictured our first year of marriage but I know that God has a plan. My prognosis is terrible and my doctors do not have any recommendations of what they can do. However, my God is greater than medical science.
I have been truly blessed by my family, my friends, my church, my community, and the Philadelphia Chapter of the ALS Association. They sent me a walker when my insurance took too long to approve it and I am looking for every opportunity to support them so that they can continue to support others like me. Continually, I work to speak for those who may no longer have the ability to speak for themselves. Regardless of what life looks like for me right now, I am invested in finding a cure for this disease. I am starting a team “A Cure for Kait” for the May 6, 2017 Walk to Defeat ALS and would be honored if people want to walk, donate, or be a part of it in any way. Please feel free to join, share, and make an impact for so many. I have been continually blessed and would love to help provide support for others who may not have as many to sustain them as I do.