Monroe, Washington (WA) - Partial Trisomy 13
Age 51 years old!! She is a long-term survivor.
We believe Lynne is the Oldest Partial Trisomy 13 living today.
 

"Lynne has taught us many things but most of all, acceptance of all of Gods gifts. She has touched our lives in such a way that only parents and families of special children are privileged to comprehend."

Update 6-3-09

Lynne has turned 50 years old today, June 3rd, 2009. She is doing pretty well and also has a few more gray hairs. Just a few weeks ago I went to her IHP, where about 7 of us discuss behavior and accomplishments. She has been irritable, sleeping poorly and recently had a seizure at night time and they found her on the floor with a black eye. She is menopausal now, which is probably is the reason for her discomfort.

In her work shop at Rainier School she and one other peer are the top producers!!! She loves her work which is paper shredding, working with some wires for a famous glass artists or sorting paper without color ink for Pike Place Market in Seattle to wrap fish in. Her money earned can be spent on trips to the beauty parlor, shopping trips to buy clothes and shoes, going out to lunch or trips just for fun. Of course her favorite thing to do, is to buy a Pepsi at the coffee shop. I still really love the big hug I get when I first get there, but after that she is pretty shy. I wish she would talk to me, they say she can say a few words, but I have heard very few of them.
I have contacted the new research study for chromosome 13 disorders.

I am anxious to have the study done on her, being she is so old and no chromosome testing has been done since 1983.

I love this site and send love to all the parents and loved ones of our precious children.
Betty VanGelder res07a161@verizon.net

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4-29-06

Partial Trisomy of the 13th Chromosome
Betty Van Gelder res07a161@verizon.net

My daughter, Lynne, was born June 3, 1959, a few days later my military husband left for France.  She was a full term baby and weighed 8 pounds 3 ounces. At birth I noticed she had a very large tongue and her thumbs kind of hung down.  The doctor clipped her tongue.  She was a fussy baby and slept very few hours the first weeks and was very hard to care for.  One doctor said she was a cretin.  

Being an army dependent I took her to another doctor at Fort Lawton.  The doctor was a very caring doctor, but had not ever seen a baby like her; but thinking she was a dwarf because her arms were so short.  Lynne was very sick then and I was told to restrict her food for she had severe diarrhea, and to bring her back every other day and to call her on the other days.  The round trip from Monroe was about 70 miles; a difficult drive for me for I had no one to drive me.  A very long two weeks passed and Lynne didn’t get much better so she referred me to Fort Lewis, about 160 miles round trip, there I saw the Chief of Pediatrics.  

On my third trip there he put Lynne in the hospital. That same week my father was in the Virginia Mason Hospital in Seattle with colon cancer.  My husband was brought home from France on a compassionate leave.  When Lynne was off the critical list we brought her home.  She still had sleepless nights and the diarrhea continued.  I usually changed 7 to 14 dirty diapers every night.  My husband was reassigned to Camp Hanford, Washington. My beloved father died.  

A few months later Fort Lewis wanted to do more tests so Lynne, my 4 year old daughter Gayle, and I were flown by a MATS plane back to Fort Lewis, after all this there still wasn’t a diagnosis. Several months past and in 1960 the Chief of Pediatrics wanted to present Lynne at a doctor’s convention in Tacoma.  A nurse took her in the auditorium, I wasn’t allowed.  There was a well known doctor from Chicago and with 130 doctors present he said she had Hurler’s syndrome.  When Lynne was in her teens and then living at a state facility, more tests were done and they said it wasn’t Hurler’s but a chromosome problem. Finally with more advanced chromosome studies in 1983, it was determined she has partial trisomy of the 13th chromosome.

Lynne learned to walk at 23 months old. What a great day for all of us. I could tell she was beaming with pride with those first wobbly steps. Lynne is profoundly retarded, has poor vision, wears a hearing aid, has rocker feet, claw hands and has seizures. It was hard putting her in Rainier School but she required around the clock care.  At that time there weren’t all the services locally that are available today.  She was 2 ½ years old then and was quite violent, I feared for the safety of my newborn son, when I saw her throw a puppy against a wall.

She is happy at Rainier and she gives me big hugs and kisses when I visit her. When we leave the grounds to take her to lunch, she is always anxious to return.  Her job there is a paper shredder and is very possessive of her machine.  With Social Security and her wages she has ample money to buy her clothes and needs.  She loves to go to the coffee shop to buy a Pepsi with her one “dawller” waving in her hand.  She doesn’t understand about spending more.  There are times when she is upset and hard to manage, but with proper medication, not really violent.  She can say a few words, mostly command words, but most of her speech is garbled.  She loves to take baths and the staff usually gives her two a day.  I could move her to a group home but I feel the change would be too hard on her, change really upsets her; also I am very pleased with the care she receives.  She was in Special Olympics twice in the ball throwing event.  One time she was so excited she just dropped the ball, but the ribbon received was just as good as the others.

Lynne has come a long way, with all the handicaps she has struggled with; she is a very determined middle-aged woman.  As a family we are very proud of her.  It makes me sad that that her quality of life is not as great as it should be, and I know as a baby she suffered way too much pain, but there has been much pleasure and love mixed with all the pain.  Lynne has taught us many things but most of all, acceptance of all of Gods gifts. She has touched our lives in such a way that only parents and families of special children are privileged to comprehend. The time comes at some point as a parent you will not need to ask ‘why?’ somehow you will know why, you may not be able to put the why into words, but your heart will tell you.  My heart is filled with love and compassion for a very special daughter.                           
 
 
A note from Lynne’s sister, Gayle, written in 1989
 
            I went with my family to Fort Lewis a few weeks ago to see my sister compete in the Washington State Special Olympics. It was her thirtieth birthday that day and I marveled at how very young she looked.  There is no age in the retarded face for the woes of the world are not etched upon them.  She was happy to see us although I do not know how she remembers us; as friend, as acquaintance, or just a familiar face and voice.
            It was a very warm day and she wore sweats over her shorts.  Mom and I took off her pants before she was to be in her event and we took off her shoes to pull up her socks.  Her feet were gnarled and twisted in absolute torture, it appeared to me, and I could not understand how she could even walk.
            We took many pictures.  I have so few of her.  I thought that afternoon that perhaps it would be a very long time before I would see her again.  I also had this dread that she would die and I wanted a record that she existed in my life.  She, who has spent so very little time with me, but yet has had such a profound effect on me.  When I was very young, I pretended that she did not exist, it was all too embarrassing.  Now I glory in her, for she represents a sweet and lovely part of our family.  She has made me aware that though there are differences in people, we are all alike.  She taught me tolerance for those who struggle just to get through the most simple of tasks.  She can find joy in the tiniest things and makes me ashamed that I cannot find that same joy in my own life as I have so much more opportunity than her. She laughs always and will laugh at herself, something I have a very hard time doing.  Her feelings are hurt so very easily and I love that we share that, as my feeling are easily bruised.
            When we sat in the stands as the awards were being given out and her name was called, I was so very glad my sunglasses were on.  I cried.  It was the very first time I had seen her accomplish something that the normal world would even consider an accomplishment. She had won a ribbon and pride in herself.  It meant more to me that my kids were there to witness this because I want them to remember her. She is part of who I am, more than I realize.  I only wish she knew.