Jess Stewart Anderson
Sept 25, 1998
The Journey
Our journey with Jess began on October 1, 1993. The delivering doctor didn't notice anything wrong with Jess. However, about an hour later our pediatrician visited us (while still in the delivery room) to review our baby's health just as he had with our previous two children. As he reviewed all the things that were right with Jess, we knew that there was something yet to be said. Finally, the doctor said that he was concerned about the possibilities of a mongolism. The feelings at that moment can barely be described. They came from an immediate realization that there is no fixing this with medicine, or surgery, or anything.Anyway, the doctor said that there was just a chance, but that he wanted to have test run just to be sure. He said that he would have results in about 3 days, as he didn't want us to worry. So we worried. I thought immediately about reasons to be thankful that it wasn't worse. But in the end, I lost 10 pounds in that first week. I remember hearing a nurse around the corner in the nursery say in a sweet tone, "What a funny looking baby.", and a second nurse who knew I was there, say "Shh!". We told our parents. Reactions were varied. As the days went by, nurses and others all were certain that there was nothing wrong with the baby; he looked too normal. We tried to hang on to that, but then there was that doctor having those tests run.
After two long weeks the tests came back stating that Jess was not classic Trisomy Downs, but that he did indeed have extra chromosomal material attached to chromosome 4. It still could be Downs. The news was devastating. It was the bottom. We began to start telling friends. The words would barely come out.
At about two months the report was that he did not have Downs (Trisomy 21), but that the material was of an unknown origin. The medical science center said that they really couldn't determine the chromosome number with their current tests (in 1993). For me, this turned out to be a major blessing. In fact, I was very happy not to know. This left open a whole range of outcomes to be hoped for.
Time went on. A lot of time. When Jess turned 4, in 1997, we learned that they could now isolate all chromosomes. So we decided to have his genetics tested again with the new techniques. This time the answer came back Distal Trisomy 10q 25.3-qter. For me, this was a none event. It didn't mean anything. It didn't change anything. Jess was Jess. A child with special needs and not a funny sounding syndrome. Leslie hoped to be able to find information that would help in his education through corresponding with others. And we checked the web. As most of you know, there is almost nothing out there on 10q.
About Jess (written in 1998)
Jess is generally healthy and doing quite well, but on the other hand has many abnormalities. The most impacting of which is significantly delayed speech. He is just now able to communicate fairly well with us, but has many missing sounds which makes it very difficult for many people to understand him.He is just 30 lbs, and has gained no weight in a year. He is quite short at 38 inches. He has small ears and ear canals which made hearing difficult until recently, especially when he had colds. He has some allergies (rash). Cow's milk seems to be a problem, so he drinks goat's milk. He has been very susceptible to croup. He also has asthma and so we have a nebulizer. Jess is potty trained as far as pee-ing goes. However, he rarely poops on the pot, and saves it for his diaper which he wears at night. Occasionally, he has a day time accident. He is very strong. Almost from birth he was nothing but bone and muscle. He could hang by hands from a clothes line at 6 months for quite a few seconds. At about 24 months (I think), we noticed that one, or the other, eye would wander when he was tired. So, at about 3 yrs, he was diagnosed with Asymmetric Strabismus (sp?), and was operated on. This fixed the problem. At the same time, tubes were put in his ears, which lasted about 6 months before they fell out.
Jess is a bit delayed with his fine motor, but gross motor is about right. Cognitively, Jess is somewhat slow, but very well socialized. He can stand his ground with his 7 yr old brother if need be. He is very active, likable, empathetic, happy, and fun. Everyone who meets Jess seems charmed by him.
Jess has an older brother, Eric, who is 7, and a sister, Jenny, who is 10 (as of Sept 98). Neither have 10q.
Update - Jan 5, 2000
A quick update. Jess continues to do fine. He was out of glasses for a while, but has them again. He manages them completely on his own, as if he is proud of them, or knows he needs them. Probably both. He always knows where he put them. He is getting a palette spreader in his mouth which will correct a cross bite (typical kid thing) and help him get his tongue up to the roof of his mouth. This should help his speech. His speech is still difficult. Most people that know him can understand him, but not always. Otherwise, he has been quite healthy. Hears well. No croup this year, for a nice change. He is in 1/2 day kindergarten and doing well. He is certainly behind the other kids, but his is learning letters, numbers, patterns and the like. He can sing his ABC's, with a few helps. Jess played soccer this fall. He didn't get into it much. Mostly stood around. But he did kick the ball a few times when the action got too close. He is still a real charmer, but can be a bit stubborn when he wants too. We don't know yet if we well have him repeat kindergarten, or not.
--- Daryl and Leslie
| Name | Jess Stewart Anderson |
| Birth Date | 10/1/93 |
| Gender | Male |
| Diagnosis | Distal 10q 25.3, de novo |
| Parents | Daryl and Leslie Anderson |
| City | Corvallis, Oregon. USA |
| trisomy10[at]darylanderson[dot]com (change [at] to "@", etc.) |
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Jess - Age 4.5 yrs Click on me and I'll tell you my name and age! |
Jess - Age 6 yrs Click and I'll sing a song! |
Jess - Age 7 yrs Click and I'll sing two songs! |
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Jess - Age 11 yrs Click and I'll welcome you to my table! |