Hi everyone!

My name is Laurie, my hubby Chris and I have 5 great kids - we are
from NY.
The kids: Andrew almost 16 has SGBS & Duanes syndrome (visually
impaired), Summer age 12, Zachary age 9 SGBS, Chloe age 5 and Jacob
age 4.
Zach was the one that really presented with problems eary on. He
was 10.6 lbs and 23 inches when he was born. He was breast fed for
the 1st 6 months and was growing like a weed. He started out in 12
month old clothing when he was born. He used to grow 1 to 2 inches
in height in a 24 to 48 hour period and gain 2 to 2.5 lbs almost
every 2 weeks the whole 1st year of life. My laundry wouldn't fit
him from week to week. His hair grew very fast, his nails I had to
cut sometimes twice a week, If he got a booboo it healed very quick.
Zach didn't walk until he was 18 months old because of his size. At
17 months he was 71 lbs. I carried this child all the way to 100
lbs. and used to dislocate my shoulders taking care of him and just
forget about my back.
He holds a guiness world record as the worlds largest 17 month old
at 71 lbs too.(The guiness people called me and told me, I didn't
have a clue he had broke the record).
We were going to the doctor almost every 2 weeks the 1st year of
his life. I knew something was different but didn't know what. The
doctors only could blame me for his size and I got sick of hearing
it. I started doing my own investigation then.
We lost our insurance which was the worst thing that could happen
and we made $50 to much at that time for medicaid. I really was
losing my mind at this point.
A friend suggested to contact the news paper and maybe I could
reach someone that had a child like zach or a doctor may be able to
help if they heard our story. I called for a solid month straight to
the newspaper. They thought I was a nut! Finally they sent some out,
I think to just shut me up. The guy arrived and saw Zach and just
said, "oh my god"! The next day we were on the front page. We got an
endocrine doc out of it, I was thrilled! We went for testing
thinking maybe this would find an answer. Every test came back
perfect, nothing wrong. I was back at square one again. In the mean
time I was researching by phone and snail mail, we had no computer
then. I would get info in latin and take it to the doc and
say, "does he have it, Read this to me"! The doc was more interested
in how I got my hands on all this literature, I refused to leave
until the read it all to me. It was an up hill battle all along!
Then we got a call from the associated press, they wanted to do a
story on us. I didn't realize the magnitude of the AP. We did the
story and photo shoot and heard nothing for a short time. All of a
sudden all hell broke loose!!! We were in almost every newspaper
around the world in 48 hours. My phone went crazy, people and news
crews were at my door. And me with no shower or coffee yet doing
interviews to get help. At this point I was ready to sell my soul to
the devil for help- it sure did feel like I was then!
I was asking for a pediatric geneticist that specialized in over
growth syndromes during the interviews or any parents of kids with
similar issues. The T.V. shows started calling and we got a show
that had the geneticist we needed. We ended up on the Jerry Springer
show,no I didn't kick hubby's but either - it was before his show
went to what it is today! I had a film crew come into our house to
see him wake up and watch him all day. They were shocked when they
saw that he didn't eat very much at all!
We went to the geneticist and he adored Zach, It felt so good to
see this doc and feel like he knew what we were going thru. He
picked Zach up at almost 80 lbs and said he was beautiful, I started
to cry! He did all the testing and measuring of everything on this
kid, all our history - everything. During this time we were being
run down in the media, I was a bad mom, I over fed him, he's gonna
die from being so fat! People were horrible to us in public before
we went to the media, they would come to me and say those same
things too!
Zach didn't eat alot only when he went thru growth spurts. Other
than that he ate like a bird, his nick name is Gooey because he used
to throw and smear his food when he was little. His feet were to big
for shoes, I used to make him shoes from what ever I could find. Now
he gets his feet cast and shoes are made for him with built in
orthotics for flat feet. Clothing was a nightmare! Coats that fit
him around had arms that hung to the ground. Pants and shirts the
same. Lets just say I can sew my but off now, lol. Car seats just
forget, he didn't fit - shopping cart - he didn't fit, carriages -
we used a double stroller with both seats down. He was extremely big
and strong and still is!!! He was the most beautiful little "big"
boy, he looked like a cherub.
So time went by about 1 1/2 years and the media attention died down
and we hadn't heard anything in awhile. One day I received a letter
confirming that Zach had a rare genetic overgrowth syndrome called
SGBS. At that time there were only 150 to 200 cases that were known
of. We got a computer and I looked it up. Then there were only 3 or
4 web sites about sgbs and it was all medical jargin. I told my
hubby I had to go back to the media to validate us and let the world
know we hadn't done anything wrong to our child it was truley a
medical problem.
We did tons of shows from germany , japan , italy all over. The
emails, snail mails and phone calls were coming again. People
calling with good wishes, calling saying they took our article or
video to their doc to get their son tested and they had it too.
Their kids were getting mistaken for Zach when they went out. It was
amazing!! Not only did I get help for Zach but many others were able
to get help by seeing our story. I finally felt like We had some
answers and made some head way. I finally felt like we did make the
right decission going public.
Today Zach is 9 1/2 years old, he weighs 235 lbs(for the last year
he hasn't gained), 5 1/2 feet tall and in the 4th grade. He is a
good student(biggest in his class) and just started riding the
regular bus instead of the handicap bus.
The geneticist told us he would enter puberty sooner and the weight
would start to match up to his height then. The
doctors "guesstimate" is that he will be over 7 feet tall when he is
done growing.
Our son Andrew is 6 ft tall and 310 lbs he is also visually
impaired. He was born without the 6th nerve in his eyes, it is
called duanes syndrome. If it weren't for Zach having such a
pronounced growth I think we never would have know that they both
have sgbs.
As for medically - Zach has enlarged kidneys we watch for wilms
tumors. He has a floating testicle. We also went thru a period of
vomiting for no reason and the docs could have cared less because he
wasn't having failure to thrive. He also used to have bouts with
diarreaha, sometimes very bad for long period. Doc said it was milk
allergy, it wasn't. He is sensitive to sugars and fats. Anything
homemade is fine for him. If he eats certain foods premade from
store like cookies, cake or even a cheese burger from mcdonalds- he
gets diarreaha. So we watch his diet, try to keep it with low carbs
and fat and more protien. Seems to work well and his weight has
stablized now.
When all was said and done we stepped back into our "normal" life
and continue to break new waters with Zach every day. It has gotten
easier over time, for the most part and kids are good with Zach. His
heart matches his size! He is a great kid wants to be a chef and
comedian when he grows up. He doesn't remember most of it and I'm
glad he doesn't. We have archived it all for him and he knows the
whole story and is very proud of it. He loves to tell people he has
a gene, lol.
Our biggest challenge right now (and always) is for him to
understand he is stronger than the average kid. He is a 9 yr old
driving a Mac truck, lol. We tell him god gave him muscles to help
people not to hurt.
I'm sorry for the long post, I didn't intend to write so much was
just gonna say hi,lol. But once I sat down to type, it felt good to
tell our story to people that could understand it.
If anyone has any questions please feel free to ask!!!

Thanks for letting me tell our story!

Laurie :)