wolfhirschhorn.org

Recently, Sharon York, mother to Jon, reached out to me and asked if we were interested in a story about her son. Jon was born in 1964 and is likely the oldest living male with Wolf-Hirschhorn Syndrome. Jon turned 47 this month and Sharon detailed her story in this article. Although most of our stories are about the younger children more recently diagnosed, this site is meant to tell it all; especially ones like this.

This is a very special story and I am delighted that Sharon has opened her life to all of us.

Jon Kenneth York

Jon Kenneth York was born in Newport, OR on June 29, 1964. I believe that he is the oldest living male with Wolf-Hirschhorn Syndrome. I carried him for 10 full months until I was induced due to Placenta Previa (he just did not want to join the outside world). Jon weighed 5 lbs. 8 ¾ oz. and was 17 ½ in. long. He left the hospital as normal with, one testicle not down and a misplaced pupil; otherwise there was nothing to indicate there were any problems. By the end of the month Jon had not gained any weight, even though he was eating cereal in his formula and baby fruit (back then kids were started on baby food very early). Overall, he was eating very well. His doctor made an appointment for us to go to Dornbecker Children’s Hospital in Portland, OR. At that time, I had a baby boy of 1 year, a baby girl at 2 years, a 4 year old boy and a 6 year old girl. There was no way that I could stay with Jon at the hospital, so I made arrangements for me to call every day to find out if he was doing okay. They called in about 5 days to say that we could come and get him. We picked him up and after leaving the city about 25 miles, he started throwing up. He had gotten a staph infection and lost two pounds. We finally got a diagnosis “due to the parents incensed, we diagnosed this as inadequate intake”. Over the next few years there were other diagnoses, “he had no brain”, “he won’t live past 7”, and “institutionalize him”. One doctor conducted a number of tests and they all came out normal; pituitary, cystic fibrosis, and many others. These were the bad years, but we lived through them. Jon had several bouts of pneumonia but always came through fine, and he mostly grew out of them. We still have them once in a while, but nothing real bad.

Things were pretty good for the next few years, chicken pox, measles, and all the other childhood things that there were no vaccinations for, but nothing drastic until Jon was 7. Then he had a Grand Mal seizure; his first. It lasted for over 6 hours and they gave him phenobarbital, which turned him into a vegetable, lasting over 3 weeks. He has never had phenobarbital again. They gave him Dilantin and Mebaral, which he was on for many years.

There were no public education for kids with developmental disabilities back then, but The Arc of Lynn County in Albany started a school especially for children with disabilities. The school was overseen by Dr. Bud Fredricks, and the teachers trained by him. If you had a child attending, you had to volunteer one day a week and attend classes that were given by Dr. Fredricks, where you learned to write programs and how to get by day to day. I wrote a program for Jon to teach him to feed himself. 3 years standing behind him, “scoop the spoon Jon”, “put it in your mouth Jon”, etc. But he feeds himself!! But don’t give him a glass of any kind, because as soon as he is through drinking he drops it. I also volunteer for 4 or 5 days a week, and was used as a substitute Teacher on several occasions. I was also told that the following year, after taking some classes at the college, that I would be able to teach at the school. This is when everything fell apart. A couple of weeks after Jon turned 9, his father was killed in a car accident. Jon started crying, no tears, I still am not sure why, but things went from bad to worse. I placed Jon in the State Institution for the Mentally Disabled, and my other children with relatives. I went to work as a bartender and was trying to get my life back together. About a year later, one of the staff wanted to take Jon as a foster child. I was back on my feet and went and got him. My other kids were with me and we became a family again. We had moved to Wenatchee WA and Jon was back in school. They still did not know what to do with him, they tried speech therapy but dropped it shortly thereafter, no ISP’s at that time. So he crawled around the classroom, looked at himself in a mirror on the wall and really had no real goal. This went on for a good many years until he turned 21 and was through with school. That year he got a reverse walker, Jon did not have any balance, but with the walker he began to walk. He did not like to, but he did it. He was enrolled in a program at the Adult Development Center, 6 hours a day, mostly social, but with help in walking and learning to get around in a wheelchair. He has been involved in this program for many years now. It has changed a lot, now it is called pre-vocational training. He does some sorting, with help, and only goes for 3 hours a day, 5 days a week. For Jon, it is social, but he loves it.

Jon lived at home until he was 35, during those years, we traveled a lot, we went to San Francisco, Washington DC, Minnesota, Massachusetts and others. At home we went to lots of meetings in Seattle WA and on the way home, stopped for lunch at Jon’s favorite place, sandwich and pie. These were great years and we both had fun. Then I hurt my back moving my mother and I could no longer lift Jon. He weighed about 60 pounds and was 4 foot tall, but between him and lifting the wheelchair, I could no longer do it. Between his case manager, the Executive Director of Residential Homes, and my state representative, I was able to place Jon in the home in the community that I had wanted to have him placed in if something should happen to me. He lives in a great home, there are 9 clients, all medically fragile, except Jon who we classify as physically fragile. He is loved, safe, and rottenly spoiled by staff. Jon, being the con artist that he is, gets staff to do more than really is necessary, although we are clamping down and making him to more. Jon may or may not have a hearing problem, but we all feel that he hears everything that is said, and if he wants to do it, he hears, if he doesn’t want to, he doesn’t hear you at all (sound like all kids?). I live about 7 blocks away and can see Jon anytime day or night, just walk in and see him. We are so lucky in Longview WA, we have a great many homes for 4 people, one for elderly, one for children with autism and some apartments for a client with a support person checking as they need it. They are all run by the same Executive Director from Life Works.

Jon now weight about 68 pounds and is still 4 foot tall, he is healthy, still on Depakote for seizures, and was just recently diagnose with Leukemia. It seems that he has had it for quite a long time, but no one realized it until just this year. He is doing fine, nothing much has changed, he does all the things that he has always done.

Some of the highlights of Jon’s life:

• Jon had it pretty good in the State Institution as at night he would get up and go sit on the nurse’s lap, so he got more attention than most of the clients.
• Jon was being carried into the house by his sitter when she fell and Jon got his food caught on the edge of the concrete step. He cried two tears. We took him to his doctor, who said, I am not touching that, take him to a surgeon. We did and he said that it was a fracture and to just make sure that no pressure was put on it. Jon’s pain tolerance is very high.
• The Executive Director of ADC said that Jon was put on this earth to make people laugh. Jon has a most infection laugh. One of the Program Directors, where is now lives, took him down to the main office, and within just a few minutes he had them all laughing.
• When he first moved to Cedar View (where he lives) we had a meeting at ADC to make some goals for Jon. His Case Manager, the Program Director from Cedar View, the Executive Director from ADC and me were discussing what Jon could be taught to do. They suggested that they teach Jon to feed himself. I almost couldn’t speak but finally I got it out that Jon had been feeding himself since he was 9 years old, he was now 35. That night at dinner, one of staff said “Jon, use your spoon”, he picked up his spoon and proceeded to feed himself. They had been feeding him. Brat that he is, he let them.

I think one of the most important things that Jon has done is to teach me patience. I still don’t have a lot but I do have more than I had. Because of Jon I have been very active in The Arc for many years and still do volunteer work for The State Arc.

Jon’s sister, Kim will be his guardian after I am gone, and she will leave him where he is and will be there for him. She lives about 100 miles away, but will make sure that he is still safe, loved and taken care of.

Jon has made a difference in my life, given me goals, and seeing that all people are basically the same. Enjoy your child, and love life.

Sharon York, mother of Jon Kenneth York – 1964

(Sharon is attempting to provide photos of Jon. They will be added to this story at a later date.)