Rare skull disease afflicts child

Axl Deacon is just like any other 17-month-old child, except for one thing: He suffers from a rare disease that causes normally soft and un-fused bones of the skull to close and harden, giving the brain too ... Full Story
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Lovey

Berkeley, CA

#1 May 30, 2008
What are the addresses for Bank of Hawaii and First Hawwaiian?
Greg

Oregon City, OR

#4 May 30, 2008
Once again, shame on the Health Insurance Industry. They need to make these special situations coverable when there are no Specialists available where you live.
Ikaika

Kula, HI

#5 May 30, 2008
Poor child. Hate it when little kids are afflicted with serious ailments. They should be having this time to just be kids. I've already donated at Bank of Hawaii. Was only $10 but I'm sure every little bit helps. God Bless.
Chris

United States

#6 May 30, 2008
My son had this surgery over 26 years ago at the Children's Hospital in Denver by an amazing neurosurgeon--Dr. Robert Hendee Jr.
Kailua Cranio Father Too

Waipahu, HI

#7 May 30, 2008
My son had the same condition. His operation was done locally by Dr. Michon Morita working out of Kapiolani Children's Hospital as well as Queens Hospital. Dr. Morita did a super job on my son. My son's operation took place in November 2004. Today he is doing fine with no problems. Again Dr. Morita did a good job. Unless he stopped doing this type on operations, he would be your best bet locally. I have the proof: My son is doing great almost 4-years later.
loco moco

New York, NY

#8 May 30, 2008
Strange we don't have anyone doing these in Hawai'i anymore. We used to do two or three of them a year at Kapi'olani-Children's all during the 80s and 90s.
Confused

Hilo, HI

#9 May 31, 2008
Check out KHNL News 8. The parents are choosing to have the operation done on the mainland. There are at least two doctors that are more than capable of doing this type of operation in Hawaii with excellent results. The parents have a right to choose BUT the notion that there are no doctors in Hawaii capable of doing this type of operation is false!!! That is why the insurance will not pay for the operation in Texas. My best wishes for Axl and his family. Made god bless you and make you whole.
what is the truth

Hilo, HI

#10 May 31, 2008
"The problem? There is no specialist in craniosynostosis in Hawaii, according to Deacon."
This is bad reporting on The Star Bulletin's part -Bali Fergusson. This statement should have been checked out before printing. The above statement was totally false. I know one of the doctors in Hawaii that perform this type of operation and has been doing it successfully in Hawaii.
Lina

Hilo, HI

#11 Jun 1, 2008
my son had his operation in 1993 when he was almost
1 year old. I kept his pictures of the head with
scar.

he is now 15 years, the scar is so large in the back. my son gets embarrassed when people comment
"what happened to your head? he his is still a little flat on the back right of the skull.

In 1993 there has two doctors who did that kind of operation. Right now, I can't think of their
names. The operation cost us 10,000 in 1993.

we are thinking of you and your family.

Lina Yasuda
Aunt of Axl

Keaau, HI

#12 Jun 1, 2008
Just FYI, what the news stories did not print or show (esp. ch 8) is that the doctor who they interviewed refused to treat Axl, she was busy. The doctor the insurance finally did give an appointment to Axl with, after a 4 month wait (this was after months of them questioning thier own peditration and being told he was fine) said "its not my speciality, but, uh, i could do it" Does this envoke trust to crack open your childs skull? I am disappointed in some of the editing and reporting of these stories, they cut out the portion where Moana told ALL of the information to the reporters and did say there was someone here who could do it but, like i said TRUST. The doctor in Denver does about 800 of these surgeries each year, people travel from all over the world to be treated by him for a reason.
Lina

Hilo, HI

#13 Jun 2, 2008
Aunt of Axl wrote:
Just FYI, what the news stories did not print or show (esp. ch 8) is that the doctor who they interviewed refused to treat Axl, she was busy. The doctor the insurance finally did give an appointment to Axl with, after a 4 month wait (this was after months of them questioning thier own peditration and being told he was fine) said "its not my speciality, but, uh, i could do it" Does this envoke trust to crack open your childs skull? I am disappointed in some of the editing and reporting of these stories, they cut out the portion where Moana told ALL of the information to the reporters and did say there was someone here who could do it but, like i said TRUST. The doctor in Denver does about 800 of these surgeries each year, people travel from all over the world to be treated by him for a reason.
You're right!! the parents know what's best for
little Axl. It's scary for every parent who goes
through this type of operation for their child.
Lani

Pearl City, HI

#14 Jun 2, 2008
Lovey wrote:
What are the addresses for Bank of Hawaii and First Hawaiian?
Aloha Lovey,
Here are the mailing addresses for the banks:
Bank of Hawaii
111 S. King St.
Honolulu, HI 96813

First Hawaiian Bank
999 Bishop St.
Honolulu, HI 96813

Couldn't post the banks ph #s, but if you Google the banks' names you'll get more info. Make sure you reference Axl Deacon. Mahalo (thank you) for caring.
nic hika russomano

Jacksonville, NC

#15 Jun 3, 2008
Deacon family i love you and wish you well!
Parent

Honolulu, HI

#16 Jun 5, 2008
My son was born with craniosynostosis and had the correction surgery recently. The surgery was done locally and I am very happy with the results. I understand the stress that the family is going through and I wish them luck with the upcoming surgery.
Lina

Hilo, HI

#17 Jun 7, 2008
Parent wrote:
My son was born with craniosynostosis and had the correction surgery recently. The surgery was done locally and I am very happy with the results. I understand the stress that the family is going through and I wish them luck with the upcoming surgery.
How old was your child? My son had it done 15 years ago.
Parent

Honolulu, HI

#18 Jun 10, 2008
Lina wrote:
<quoted text>
How old was your child? My son had it done 15 years ago.
My son was 3 months old.
Kailua Cranio Father Too

Hilo, HI

#19 Jun 15, 2008
Aunt of Axl,
Any updates on Axl? Wasn't his surgery scheduled for today in Texas? Just trying to find out how Axl is doing as well as the parents. I do know what they are going through. Even though my son's surgery was 4 years ago, I remember it like yesterday. Today I am thinking what I was going though that day my son had his surgery day. Just let the parents know each day that goes by, Axl will get better. Today will be the roughest day for all of them. It took my son 10 days before he left the hospital and that was considered long. Four years later, everything is still fine. I will keep them in my prayers.
Lina

Hilo, HI

#20 Jun 23, 2008
just wondering how is the little guy doing? maybe the aunt will text message us...hopefully!
Alison

Dallas, TX

#21 Jul 5, 2008
Chris wrote:
My son had this surgery over 26 years ago at the Children's Hospital in Denver by an amazing neurosurgeon--Dr. Robert Hendee Jr.
I was a patient of Dr Hendee and Dr McLeary's. Those amazing men saved my life!
Christy

United States

#22 Jul 18, 2008
I don't care if the surgery is offered in Hawaii. The Heath insurance should cover this procedure. I have two brothers who were able to be treated about thirty years ago. I would be outraged if this were my child for treatment. For God sakes Texas is the same country.

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