If you were to meet Alex today, you would be met with an eager and excited smile. He is one of the most friendly and outgoing people you could possibly meet. You would almost be in disbelief that he lives on a ventilator in our home.
Alex was diagnosed as a child with Duchenne’s Muscular Dystrophy alongside his late brother, Justin Tipton, and completely lost his ability to walk when he was eight years old. He lived in Garland, Texas with his late father, stepmother, and his brothers until 2009 when we moved to Carlsbad, TX after Alex's graduation from North Garland High School. In 2014, Alex became very sick with a case of double pneumonia for the second time in his life. He was offered the choice of trying to recover from it naturally with a minute chance of living or to prolong his life with a tracheostomy. He chose the trach.
For the next year and a half, Alex lived in the Southern Specialty Rehabilitation Center in Lubbock, Texas. A respiratory therapist at the facility told us about Apple Homecare, and we realized that meant we could take care of Alex at home. He has been living with us ever since.
Alex loves playing video games, collecting plushies and Pokémon cards, and hanging out with his friends and family. He is a huge fan of My Little Pony and Pokémon and can talk for hours on end about them. He and his brother, Will, enjoy each other’s company as Will plays games on the TV that Alex can no longer play due to complications with his disability.
Alex plays video games through emulators on his phone. He likes to play Minecraft with his cousins, and he plays various fan-made versions of Pokémon using a GameBoy Advance emulator. He also keeps up with his old friends in high school through Facebook.
Alex’s disability causes him to gradually lose strength in all of his muscles. When he was in the hospital for double pneumonia, he lost nearly all the strength in his hands, so his fingers are stuck where they normally are. Because of the trach, he is essentially bedridden, and he only ever gets out of bed to go to the doctor, have the sheets on his bed changed after a bath, or to participate in large family gatherings. He has to be fed by another person since he cannot eat on his own accord anymore, and he uses incontinence supplies.
Taking care of Alex is immensely difficult. There are a ton of micro-adjustments that we make for him constantly throughout the day. As I get older, it gets more and more difficult to continue to take care of him. I am not without help, however. His brother Will, who is a student at Angelo State University, helps in taking care of Alex during his spare time outside of school. My granddaughter, Shanda, also helps out when she is over here while Will is in school.
Because of the deterioration in his muscles, nearly everything causes Alex immense pain. He cannot move his arms or legs either, so we have to adjust those as needed when he gets uncomfortable. We have to scratch his itches for the same reason. Additionally, he has trouble holding onto his phone at times, so when he drops it, someone has to hand it back to him.
Every day, somebody needs to clean out and change the inner cannula in his tracheostomy. It is a lengthy process and it generally requires a lot of suctioning of the mucus that builds up in his throat. Once a month, we clean out and change the outer cannula, which goes directly into his throat.
Alex's voice is rather soft, so it can be difficult to hear him or understand what he says sometimes. He also has Attention Deficit Disorder and had taken Ritalin for it when he was younger, so he sometimes says the wrong thing, usually in the matter of his left and right.
Words cannot express how amazed I am that Alex is as happy as he is. He has gone through so much in his life due to his disability, but he genuinely enjoys life as if he were completely normal. He is extremely friendly and outgoing, and he loves meeting new people and seeing our friends when they come to visit. He loves to talk to people and he’s sweet, loving, and kind to everyone. We look up to him in a lot of ways for that. I don’t believe I would be anywhere near this happy with my life if I were in his shoes.
Alex is currently 30 years old and is shooting to live till he is at least 42. With all the help, love, and support he receives from his friends and family members, that goal is surprisingly more realistic than it seems to be at first glance.