In her own words, Dr. Staci Flint details the inspiring story of her son, Kyle Jackson, who continues to march on while fighting a terminal degenerative disease
This is the story of Kyle Jackson, or as some of you know him as, “The life of the party.”
Kyle was born at West Penn Hospital at 28 weeks and was only 2 pounds, 7 ounces. I had a great pregnancy and the doctors had no idea why he was born so early. It shocked us all. The first year of his life, he was on machines, monitors, etc. But the doctors all said that he was fine.
“Doctors said that he wasn’t going to make it to the age of 2. He is now 21.”The day he turned 1 he had a terrible seizure and ended up being hospitalized. It was at that time he was diagnosed with a seizure disorder. He would have 20 to 30 seizures a day, but we made it through. He started walking and then a few months later he could not even stand up. As time went on he was losing more and more functions. No one knew why. It wasn’t until he was 2 years old that I made the doctors look harder to find out what was wrong.
DR. STACI FLINT
Holding a picture of her son, Kyle Jackson
Finally, after many tests and genetic testing, Kyle was diagnosed with a terminal disease called Metachromatic Leukodystrophy, which is a terminal degenerative disease that takes over a person’s organs and functions. I can tell you that my heart dropped when I found this out. Doctors said that he wasn’t going to make it to the age of 2.
He is now 21.
I was a young mother at that time and wasn’t as grounded in my faith as I am today. So, I listened to the doctors and I tried to give Kyle the best time of his life, despite the multiple surgeries, trachea, feeding tube, etc. The entire time I had this loving, happy son that wasn’t promised to see tomorrow.
Then God woke me up one day and said, “Hush, child, it will be OK.”
From that moment on I knew God had Kyle and he was OK. So, we lived our life. It wasn’t easy but we had our routine. As time went on Kyle got bigger and stronger and heavier, and once he was 10, I could no longer lift him, so at that time I was a single mother and had to make the decision to find a care facility that would take care of him. We did some respites at McGuire and they were able to care for him permanently. My family gave me heck because McGuire was not around the corner, but out of all the places that I had looked at, McGuire gave me the most comfort in knowing that he was in a good facility and would be well taken care of.
My child is spoiled. The staff at McGuire takes care of him just like we would. They love him and every resident just like they are their own. Not only do they treat the residents like family, but they also treat the family members as family. A good example of their love and commitment to their residents and families was from the time Kyle walked into the McGuire’s door, but especially 3 years ago when he had a major setback with his health. He had a very severe stroke and once again the doctors said that there was nothing else that they could do…. Well, let me tell you, McGuire did more and God gave Kyle rest.
Kyle was resting for over a month and a half. That entire time McGuire staff would come and visit, pray with us and for us, hold us in their arms, cry with us, bring us food and goodies, etc. They were right there with us all the way. They hurt just as much as we did. I remember telling my husband that Kyle just was not fighting and this was a side that we had never seen before. Kyle has always fought through everything. It was at that time that I knew it was OK either way things might turn out. We met with the doctors and decided that we just wanted him comfortable. That evening, “Sister T” called me and said, “I just want you to know that we are all here for you and we love you and him, and no matter what time of day or night, if you need me you call me.”
Well, I cried all over again because I knew that she meant it and they all felt just like we did.
But then, Kyle started getting stronger, he started fighting…He fought his way back to being as much of Kyle as he could be. He spent a whole year away from McGuire in Children’s Hospital and the Children’s Institute with the McGuire staff visiting, praying, sending cards, gifts, Facetiming, and helping the staff prepare for his return. We planned his care together.
To this day Kyle is still getting the best care because of McGuire. McGuire and all their staff have truly been a blessing to our son, our family, and to all those that they care for. McGuire gives the best quality of care that a person can have. They never give up no matter what. That is the same strength and fight that we have for Kyle.
In closing, I would like to share 3 quotes from an unknown author that reminds me of McGuire and all the love and care and inspiration that they give to my son, Kyle, and to all.
When the world says, “Give up,” hope whispers, “Try it again, you can do it….”
“Have hope, be strong, laugh loud, live and play hard in the moment, smile often, dream big and be happy…”
And last, but not least… “Life is a series of thousands of tiny miracles. Notice them.”
—Dr. Staci Flint, mother of Kyle Jackson
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