Ory's Story
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Ory Posing with his R2D2
Ory was born April 16, 1996 at 10:15 at
night. I was 17. Ory was 6 days overdue. It was an easy pregnancy and birth.
He was a small baby, only 5
lbs. 15 ounces. Of course, I was a small baby also. When I brought him home
from the hospital, he slept most of the day and was awake all night long.
I was, and still am, lucky to have my parents help and support.
The doctor’s noticed Ory had bumps on his legs. They didn’t know
what they were. They thought they might be fat. Ory didn’t gain a lot of
weight fast. He wasn’t keeping his food down either. His pediatrician sent
us to a hospital to make sure everything was ok with Ory’s stomach. It
was fine. The pediatrician put Ory on a special type of formula. That helped.
When Ory was 4 months, his pediatrician sent us to the hospital again to see
what the bumps on his legs were, and to find out why he wasn’t gaining
weight. We went to a geneticist. The doctor looked Ory over from head to foot.
He noticed an indentation on Ory’s nose. The whole exam took 20 minutes.
He told us he thought he knew what Ory had. An aging disease, that causes the
body to age faster than normal. He sent us home after that. We were to bring
back family information the next week.
My Mom and I didn’t understand what the doctor meant. He had given us basically
no information about what Ory had. We had tried to ask questions, but he wouldn’t
answer them. We would talk about that the next week. I am surprised we made it
home we were so upset. We had recently gone online, so I was new to the internet.
The doctor didn’t realize that he sent us home with a piece of paper that
had Ory’s diagnosis on it. So I was able to look up information on the
internet about Progeria.
We had never heard of the disease before. The only website I found at the time
was a medical one. They had taken pictures for research, of a little boy in his
diaper standing against a wall. I wasn’t prepared for what I saw and read.
I couldn’t imagine that this is what Ory had. What could I do? The whole
pregnancy I had prayed that everything would be fine with my parents and that
my child would be fine. My Mother says everything happens for a reason, but I
still wondered why. That weekend in the paper, there was an article about a little
boy that lived in our state that also had Progeria. What a coincidence.
We gathered all of our family information, which really isn’t a lot. I
was adopted. All of my paternal information is on one sheet of paper. Then we
headed back to the doctor, my Mother, Ory and I. We gave the doctor all the information
we could. He told me that I did nothing wrong, that the reason Ory has Progeria
is because it’s a genetic mutation. He brought in a specialist to talk
to us, but really, what could she do. I asked a lot of questions based on the
website I had seen. He wanted to know how I knew so much. I showed him the paper
I was sent home with. He wasn’t too happy about that, but lets face it.
I wasn’t too happy about him or his “specialist” either. How
could anyone tell you your child has an aging disease after looking at them for
20 minutes and then send us home. I think he was just too excited to be able
to see a child with Progeria. They took some of Ory’s blood and sent it
off to a specialist who had dealt with Progeria in New York. They told us as
we left that they would make another appointment with us in a year. That was
the last we talked to these doctors. I was not impressed with him. So we sought
a second opinion.
This next doctor was three hours away. We went every six months.
He
knew we were upset by how quickly the other doctor had come to his diagnosis,
so he didn’t
say Ory had Progeria until we were ready. Over a year later, we all came to the
agreement that it really was of no use to see a geneticist. They couldn’t
do anything. I was talked to about putting Ory on a growth hormone, but I didn’t
want to do that.
In 1997, Ory and I went to our first reunion. It happened very quickly. Ory was
going to a school group that helped ready children with special needs for school.
One of the ladies there had read somewhere about a group of children with Progeria
that gets together every year. She called the Sunshine Foundation and gave them
our phone number and told them about Ory. They called me about 2 weeks before
the reunion and had me send a picture of Ory, just to be sure. Then they set
us up so we could go to the reunion. Had I had more time to think about it, I
would not have gone.
Seeing a website with pictures is different than seeing children with Progeria
in person. It was very hard to deal with. Another little boy there, a little
younger than Ory, looked just like him. We were down in Florida, on a ranch that
was a couple hours away from anything. The phones didn’t work all too well
and Ory and I stayed in our room most of the time. I just wasn’t ready.
Needless to say, it made my parents very worried when they couldn’t reach
us.
Overall, the reunion was a good thing for me. Ory didn’t realize what he
had, but I was able to talk to other families that had children with Progeria
and had lost children. They helped me to understand. The one family that really
took us under there “wings” were Tania and Stuart from Australia.
They are great people.
From then on Ory and I have been attending the reunions. One year we took my
Mom and Dad, and my Mother’s parents with us. Her mother has since passed
away. She told my mother she wanted to go before Ory. She was a great friend
to me and I truly miss her and the fun times Ninny, Papa and I had. Sometimes,
just Ory and I go, or my Mom, Ory and I. My Dad has been to 3 reunions. The Sunshine
Foundation is wonderful to put this on every year. They usually only pay for
Ory and I, so my parents come when they can.
In 1998 Ory started going to speech and physical therapy. I was about the only
one who could understand him. He is doing much better now, but is no longer in
speech and physical therapy. He “graduated” in 2000.
In 1998, Ory woke up one night crying. I went in by him and thought he had a
tummy ache. I brought him downstairs to my parents and went to get something
for him, but he stopped breathing. My Dad told me to call 911. They arrived quickly
and Ory and I went to the hospital. At the hospital they determined Ory had had
a seizure. He had two more at that hospital. Ory was transferred to a different
hospital. They did a scan of his brain. It showed seizure activity. Seizures
are unrelated to Progeria. He was in the hospital for a couple of days. They
put him on medication and he was fine.
In 2000 Ory started having TIA’s. Those are Transient
Ischemic Attacks, signs of a stroke. Ory would complain that his fingers were
numb, or his mouth
or some other body part. We have taken him to the hospital many times for a TIA.
The first time they did a scan of his arteries or veins. It showed that his basilar
artery was blocked and his blood needed to find a different way to his brain.
In 2001 Ory had a stroke. We were at home when he said his leg,
arm and mouth
felt “tingly” or “sleepy”, then he collapsed. We took
him to the emergency room. They told us that it was a stroke. They gave me two
options, to put a tub in his chest for medication or give him a different medication.
Ory’s neurologist was also with us. I asked for her opinion and the doctors
that were seeing Ory for his stroke.
The
doctor in the hospital told us he would go with the less drastic medication.
We agreed.
I asked if this was a sign of worse things to come, how much time Ory had left.
They gave him a year, but they could only guess. This was very hard to deal with,
thankfully it wasn’t true though. They were going to put Ory on a medication
where I would have to give him shots in his legs, but decided on something different.
Ory regained back his movement.
Ory was still having TIA’s and we were still taking him to the emergency
room. If they lasted longer than 15 minutes we are supposed to. It seemed every
time we went to the ER, they would run tests. I didn’t like that. Ory’s
hematologist put him on a different medication in 2004, which has prevented anymore
trips to the ER and tests.
These 8 years have been very hard to deal with. The first year or two, I would
go out with my friends, but I wouldn’t really be there. But I have my parents,
my friends and my other family members. We have met a lot of wonderful people
through everything we have been through. Everyone has helped us. I try to spread
the word about Progeria because you never know if someone is going to say “Hey,
I want to help and find a cure” or something else. We are trying to give
Ory the best life possible. With everything he has been through, he is still
a little trooper. He keeps smiling, even when we can’t. He is the reason
I get through things. Yes, it is hard for me, but how about Ory. I only wish
I could put myself in his place. That he wouldn’t have to be the one to
deal with these things. We have our good times and bad times. I try to stay happy,
but some day’s it just hits me again. Ory is my life, I wouldn’t
live it any other way.
Ory has been to California, Florida, New York, Washington D.C.,
Philadelphia, Chicago, and Canada. He loves Legoland in California, we hope to
go back someday.
Especially to visit Disney there, we have never been to Disney in California.
He is very active, funny, loves to sing. He is always playing something. Cars,
trucks, trains, computer, video games, really just about anything. He would love
his own Deora II, like the hotwheel car they made into a real car. He wants it
painted like the Wave Rippers Deora II from the Hotwheel movie though. He wants
to drive. He would like to work in the construction business. He would love to
see the Harry Potter train. He
is
full
of
energy
and
ideas
and
is
just full of life. Please keep him, and all the other children, in your thoughts
and
prayers.