The first thing you notice when meeting Alan Yokiel is his wide smile and his infectious laugh. Considering all he has been through in his life, his attitude reflects a life of happiness and contentment. Much of that attitude can be attributed to his mother, Sally Yokiel, who has traveled the road with Alan and his disability.
Alan Yokiel was born during a blizzard on January 13, 1993. He was a healthy baby until he was two years old. At that time his family noticed that he was having balance issues. When he walked he would stagger and his eyes would move around. He could see, but when he turned his head, his eyes wouldn’t go with his head. “It would almost look like he was drunk. At least, that is the way I described it to the doctor.” Sally explained.
The symptoms progressed and Alan started falling down. His speech didn’t develop. According to his mother, “He would start saying words, but it was hard for him. He would communicate by pointing and grunting.”
At first the doctors thought Alan might have cerebral palsy, but he tested negative for that. At the age of three he was tested for every syndrome and disease that the doctors thought matched his symptoms. He visited doctors at the Mayo Clinic in Rochester and Children’s Hospital in the Twin Cities. After spinal taps, MRI’s of the brain, blood work and all sorts of genetic testing, the only thing doctors could find was that Alan had high cholesterol. The medical doctors were not able to come up a diagnosis so they called it Ataxia, which was a description of his movements. There was not a diagnosis of a definite disease.
When Alan reached third grade his neurologist from the cities wanted to test his blood for a certain antibody. Alan had symptoms of this certain antibody. A doctor in Rochester was studying a group of people with Alan’s symptoms. All these people had one thing in common, they had gone through chemotherapy and after the chemotherapy their bodies started producing a particular antigen and they were losing their physical abilities to walk, talk and were having balance and coordination issues. Alan had never had cancer or leukemia, but it was found that he had these same antibodies.
The next step was to send Alan to an immunologist. The thought was that this gene was causing damage to his nervous system. At this point in time Alan couldn’t sit up in a chair and needed total support. Sally interjected, “If you put him on a bench, he’d fall off of it. This was probably the lowest point of his disability.”
The neurologist suggested that to treat his problems with this gene, they would wipe out the immune system with drugs that would kill this antibody. His body wouldn’t have the antibody that was destroying his nervous system. At that time, though they still did not have an official name, they started calling it an autoimmune disease. The doctors also could find anyone else that had the same thing. Sally stated, “He was one of a kind.”
The doctors gave Alan massive IV doses of prednisone and steroids to wipe out his immune system. Since he didn’t have an immune system he couldn’t go to school for three months, until he got his IVIG, (Intravenous, Immunoglobulin, Globulin) Therapy. The therapy is a blood product that is an immune system from donors. It is very expensive because it comes from a pool of 1000 people. One person would not have enough to donate. It also comes from a pool of blood types and this blood needs to be tested to make sure it is healthy and is not infected with hepititus or aids. Alan received this therapy every three weeks at first, but now is receiving it every four weeks. That is about the shelf life of his body. This therapy keeps his immune system healthy; otherwise if he were to get even a simple cold, it could be fatal for him.
Sally stated, “There are lots of kids born with immune deficiency and many adults are finding out that they too have immune deficiency disease. Alan has an induced drug immune deficiency because of the treatment he received when he was nine years old. He now, along with his IVIG Therapy, takes medication that keeps his immune system depressed and in turn keeps the antibody suppressed. The doctors will keep him on this until they find something better. He has healed a lot and is getting better.”
A disability like this has effects on everyone in the family. Alan’s dad, Chuck, spends time away from the family because of his work. The Yokiel family also consists of Molly who is now 23. “Molly had to grow up fast. She is very healthy. She was my best babysitter and Alan’s disability affected her a lot. She got to donormal teenage things, but much of my time was taken up caring for Alan.” Sally explained.
There is no explanation for what caused Alan’s disability. His immunologist thought perhaps his first MMR shot, which he received right before he developed symptoms, might be the cause but there is no sure proof. There might have been something in Alan’s system that reacted to the shot. “That opens a can of worms,” Sally said, “There are those that agree and those that don’t. All we know is that they said it is a possibility.”
On January 13, 2014, Alan celebrated his 21st birthday with his family at a local establishment. Alan had his first beer. He gave a mischievous smile, “I liked it.” His mom laughed and said it was his first taste of beer. Alan also works at Cedar Valley Services in Albert Lea doing piece work and packaging for Walmart, Sam’s Club and Hormel. Alan stated “I have some nice friends. I like being there.”
Those that take the time to look behind the disability might be surprised to know that Alan is proficient at video games. They improve his eye and hand coordination. He can write and read anything, he can tell time and knows the calendar and can do many things the rest of the population can do. He has global delays. He is very good at some things and struggles with other tasks.
“I love Superman and I am a Minnesota Wild Fan. I am their #1 Fan.” Alan stated. In December one of his PCA’s (Personal Care Attendants), took him to a hockey game. “We won.” Alan said with laughter. Alan also likes Nascar. When he was younger and his outcome was unsure, Make A Wish sent him to a Nascar race and he got to meet Jeff Gordon. Since then he has been a fan and been to many races.
Watching mom and son you can see there is a deep bond between them. “He can read my mind. Sometimes it’s scary.” Sally said.
Allan added, “I know who she is talking to on the phone without her telling me.”
Now the Yokiels are concentrating on the future. Moving to a bigger home a few years ago made it easier for Alan to get around in his wheel chair. They also are making preparations for what would happen when his parents no longer can take care of him. The family has hired two personal care attendents that help with his physical therapy and can also stay with Alan so Sally can have some much needed time to herself. These personal care attendants have become good friends to the Yokiels.
There are times people do not know how to react to people with disabilities. Alan and Sally would like others to know when meeting someone with any disability. “Always assume they are just like you. Always address that person like they are anyone else. Do not ignore them. Never assume a handicapped person can’t talk or understand. It’s ok for you to say, “Could you please repeat that again. I don’t understand you.” It’s ok to not understand that person. In Alan’s case, he knows he has a speech problem. It is ok to tell them you don’t understand.” Sally advised.
Allen added, “Yes, people talk very loud. I can hear.” As Alan added that he still had a smile on his face.
The road has been long for the Yokiels, but perhaps Sally’s final statement shows her gratitude. “There is a bad side, but a very good side to everything that has happened. It has opened my world to awareness. I worked for twelve years with special education and never in a million years would I have done that without Alan. It opened up an entire world that I love. All kids have needs and are very special. I don’t like labels. I had a doctor say that he didn’t like labels either because those labels stick and as kids grow and get older and they change, that label is still there. If I had any advice to give anyone it would be to stand up for your child. You know in your heart what your child can do. Don’t accept the first diagnosis. Research and talk to people. Learn from other parents. They are not textbook learners. They learn from experience of what their kids did.”
There is a quote by Paramahansa Yogananda and it says; Let my soul smile through my heart and my heart smile through my eyes, that I may scatter rich smiles in sad hearts.
If you meet Alan Yokiel you will see a smile that does exactly that.