| US-
How old is Henry? What school does he attend?
R- He is 6 years old and he will be 7
in June. He goes to Denair Elementary School. Even though
we live in Turlock, Berkeley Street is the cut off for
Turlock schools. At first we wanted to keep him in Brown
School. His sister went there and we knew the school very
well. It was really important for Henry to be rooted where
he is going to grow. Typically kindergarteners and first
graders are more accepting to kids that are different.
By the time they are fourth, fifth, and sixth graders,
where judgment really begins, They’re already used
to him. We are really happy with Denair Elementary and
Henry loves it.
US- Does Henry understand that he was
born “different” than other kids?
R- Not yet. He may understand a little.
When he was born, his fingers and toes were fused. He
had surgery to separate them. The way the procedure works
is that they release every other toe and finger. When
those heal, they release the remaining toes and fingers.
We did the first phase of the surgery which was every
other toe and finger and they healed successfully. When
we went back for the second surgery, which was the remaining
toes and fingers, the toes grew back together under the
cast. That’s the body’s way. The body heals.
Henry’s body said,” we’re stuck together;
this is the way we are.” His body said that the
toes were born together, so it grew back together. When
the doctor removed the cast, there were two toes stuck
together. Henry notices that his toes are stuck together
now. It’s kind of funny because he doesn’t
notice that he looks different or that his fingers don’t
bend, but these two toes drive him nuts. That is the only
thing that he asks about. His favorite game right now
is rock-paper-scissors. His rock and scissors are the
same! So when someone does paper, he says that it’s
scissors and when someone does scissors, he says it’s
rock. So we tell him that he’s cheating. He has
a real good attitude about the whole thing.
Check out Henry’s
march on MySpace
www.myspace.com/henrysmarch
US- When did Henry’s
treatment begin?
R- His first treatment was at nine months
old. That was cranial. His skull was fused, so we had
to have the skull released. Then for the next five years,
it was a lot of different procedures. It was tweaking
the skull, tubes in the ears, and separating fingers and
toes. It delayed him learning how to walk because of the
cast. Other than that, he was a real typical baby.
US- Is he going to have the LeFort procedure
done?
R- That will be his next big surgery.
He will probably have that one when he is eight years
old. That is the one that scares me the most. I’ve
had his head reconstructed twice. We had to travel to
Dallas for all of his head surgeries. The build up is
getting to Texas. We have to make sure he is well before
he goes under the knife. The flight, keeping Henry happy
on the plane, the accommodations, and everything else
is almost more stressful than the surgery. Once he goes
into surgery, I feel relieved because that’s what
we are there for. What stresses me out about this procedure
is that it will change his appearance very dramatically.
What I hear from other mothers of kids that have had this
done is that they are more accepted socially. They look
more normal. The family really has to adjust because they
look so different. They say that they hear their kid’s
voice, and in their mind their kid looks one way, but
then they see the child and think, that’s not my
kid.
US- Do people confuse Apert Syndrome
with mental retardation?
R- That is one of the things I want to
share with people about Apert Syndrome. There are some
kids that are classified as mentally retarded, if they
are delayed. Henry is a little academically delayed but
not by much. He is doing pretty well in school. A lot
of kids with Apert Syndrome can become mentally disabled
because they don’t have the cranial surgery. So
the skull puts pressure on the brain which delays their
learning abilities. What also hurt them is the sleep apnea.
Lack of oxygen to the brain is going to delay you. The
cruelest thing about this syndrome is that these people
look like what you would classify as mentally disabled
yet they’re not and so they’re judged and
maybe made fun of and called names which is very hurtful
and they know it. There are people out there with mental
disabilities who look normal and you wouldn’t know
it unless they opened their mouth. When people see Henry
walking around, people automatically think that there
is a kid with a mental disability. It’s the initial
judgment. That is what’s sad and cruel about the
whole thing. Mentally they are ok, but physically, people
are harsh on them and cruel toward them and they know
it. They suffer the brunt of it because they understand
the teasing. They lead very normal lives. Some do live
life behind closed doors. It’s kind of sad, but
they are less judged. I spoke to a representative of another
foundation and they sounded brilliant. She gave me all
the information I needed about the organization and reassured
me that Henry would be fine because she (herself) grew
up with the syndrome.
US- How did you hook
up with CCA Kids?
R- I had Henry in June of 2002. When
you have a special needs child, there is a grieving process
that the parents go through. When you’re pregnant,
you have this dream baby, especially when you already
have a four year old child that is brilliant in reading
and doing all of these other brilliant things, you’re
ready for your second brilliant, perfect child.
To learn more about CCA
go to ccakids.com
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Henry and his older sister,
Lauryn, playing table hockey
When they come and it’s not
what you expected, you don’t want to name them
the name that you had chosen for them. We struggled
with that. I thought, “This isn’t Henry”.
My husband kept telling me that he is Henry. All the
little things that you had planned kind of shatter.
By the Fourth of July, I went through a grieving process.
He was born two weeks before the fourth, so we were
going to send out these All American Boy birth announcements.
Instead I was in my house, rocking this new-born, who
was breathing really bad from the structure of his face.
This wasn’t the Fourth of July baby I had planned.
So I got online. We had seen some surgeons from Stanford
that wanted to do the cranial surgery but didn’t
want to separate the toes and fingers. I was determined
to find a surgeon that wanted to take care of Henry.
I was referred, by other parents, to about two surgeons
that could perform all of the procedures. One was in
Kentucky and the other one was in Texas. I asked my
husband,” What’s closer, Kentucky or Texas”?
He said,” Texas.” So I told him that we
are going to Texas to take care of the fingers and toes.
When we had gone to UCSF for some evaluations, they
gave us a pamphlet about Apert Syndrome. We read it
and it was really well-written. On the back it said,
“courtesy of CCA, Dallas Texas.” I didn’t
make the connection at the time. When we got to Texas,
in the doctor’s office, there were these same
brochures. I reminded my husband that these were the
same brochures from UCSF. I read the back again and
realized that the author of the brochures was the same
surgeon whose office we were sitting in right now. So
I contacted CCA and asked to be put on there newsletter
mailing list. That was in 2002. What we realized was
we were going to have to bring Henry on a plane and
fly him over for the surgery. With planning, we can’t
afford it. We can cut things out because surgery was
going to come first. I called CCA and told them that
I was going to have to fly my child to Texas for the
surgery and I need help. The truth is that my husband
makes very decent money. However, I can’t afford
it. My mortgage and bills are getting paid and I’m
not considered low income. What do I do? They sent me
an application and I filled it out. They ended up paying
for our plane tickets. If our situation was dire, or
mid to low income, I know they would have paid for plane
tickets, hotel, and food. After that experience, I realized
that there are so many families out there that are stuck
and need to get out of their small town to get to a
specialist. What I want to emphasize about CCA is that
they are based out of Dallas but they offer help nationwide.
They helped us out a lot. They just recently helped
a family in Modesto. There is a misconception that since
this organization is from a big city, they cater only
to big city kids. They help more kids from small towns
because the local hospitals don’t offer the same
services as a hospital from a big city. I can’t
take Henry to Emanuel Hospital to get reconstructive
surgery. What was really surprising was that it cost
the same to travel to Dallas for surgery as it did to
go to UCSF. In San Francisco you have to pay for parking
($20/day), hotel (over 100/day), and expensive food.
In Dallas the parking was free, the hotel was only $39
a night and the food was less expensive. If a family
chooses not to go to Dallas and goes to UC Davis, UC
Stanford, Valley Children’s Hospital, or UCSF,
all of that extra cost is going to come out of their
pocket. CCA says, “let us help you, we will cover
those costs”. That is why we stand behind this
foundation so strongly. They’re all about helping
the cause. There are no boundaries.
Henry loves watching
hockey
US- What kind of
turn out do you expect this year?
R- A huge turn out! We had way more
than we expected last year. We stopped counting runners
well after 200. I had a lot of walkers that were on
the course. They really didn’t care about the
time. This year, because of word of mouth, and the quality
of the race they saw last year, I’m expecting
double. I would like to see about 800 people out there.
I’m planning to have three races. We have the
5K, the 1 mile, and the kid’s dash. I’m
expecting 200 children on the kid’s dash. I’m
expecting 200 people to enter the one mile. I would
like to see 200 runners for the 5k run. All together,
I’m expecting 600 runners with 200 additional
family members and spectators. I’m pretty confident
with that number.
US- Tell me about the course. Does
it leave the campus?
R- The course is totally on campus.
It is a total of 3 miles long. It’s a collegiate
course.
US- What are Henry’s
hobbies?
R- Hockey. He is a hockey addict. He
loves the San Jose Sharks. We recorded the game where
the Sharks took on the Ducks and he watches it everyday.
He has two hockey nets and hockey equipment. He is all
boy. He loves motorcycles, cars, and trucks. But he
mostly loves hockey. He is the most joyful child and
so self occupied. That’s why he’s not in
here. He’s off somewhere having fun. It’s
funny because when I first had him, it was such a challenge.
His first few weeks I thought, what does this mean for
my life? It’s so funny because me and my husband
tell him that he is such a treasure. He is such a gift
to our whole family and to the community. It cracks
us up. We’re out and about with him and people
know his name. He is joyful, happy and well-rounded.
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