Rare skull disease afflicts child

Rare skull disease afflicts child

There are 24 comments on the Honolulu Star-Bulletin story from May 30, 2008, titled Rare skull disease afflicts child. In it, Honolulu Star-Bulletin reports that:

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 ...

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Lissa

Carbondale, CO

#23 Apr 25, 2009
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.
Just came across this post while doing a Google search for Dr. Robert Hendee Jr. I'm wondering where he is now. My son was diagnosed with craniosynostosis in 1986. Dr. Hendee saved his life when he performed the surgery at that time. My son is now 23 years old and just graduated from college. He was a college football player and played sports his whole life. He was always a good student. This is all because of the amazing work of Dr. Hendee and the staff at Children's Hospital in Denver. I just wish Dr. Hendee could know my son's suceess story! We are so grateful to him! For others who are just now going through this, there is a rainbow on the other side. Stay strong and know that your child has every chance to be normal and live a healthy active life after this surgery.
A Mom

Denver, CO

#25 Mar 26, 2011
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.
Dr. Hendee operated on my son as well, 26 years ago, at Denver Children's. He was an amazing neurosurgeon and a kind and compassionate man, totally dedicated to the children he served. Re: the article...My health insurance at the time claimed the surgery was "experimental" and refused to cover it; we tried to hang on but ended up filing a Chapter 7. My son had three craniofacial reconstructions secondary to involvement of the coronals and lambdoidals; one at 22 weeks, one at 44 weeks, and one at 3.5 years. I am an Occupational Therapist and back then there was NOTHING to support parents going through this nightmare; I had never even heard of this condition and at the time the stat was 1 in 10,000 live births. But stats loose all meaning when you are the person who has had the "one". Now there are websites (CAPPS), support groups, etc. I kept my son in a Bell Shell (helmet) until he was three and a half, then took it off and held my breath. Today, at 26, he has migraine, but so do I and so does my daughter and so does every one else on my mother's side of the family, so who's to say if the cranio had anything to do with that? My thoughts and prayers are with anyone who is going through this.
Diane

Pueblo, CO

#26 Apr 14, 2011
I just came across this website and I was reading your story about Axl, although this is 2011 I hope everything well. My son will be 30 years old next Monday and he had his first surgery October 1981 at Denver Children's Hospital by Dr. Robert Hendee. My son was the second reported case and he is doing great except for migraines. I hope all went well for you and your son.
Ursula Yocherer

Nashville, TN

#27 Nov 16, 2011
DID ANY OF YOU PEOPLE SEE THE 60 MINUTES SPECIAL REGARDING HENDEE AND HIS PARTNER MCCLEARY? THEY'RE QUACKS AND THE CLASS ACTION LAWSUIT HAS SINCE COME AND GONE. HE OPERATED ON MY CHILD BACK IN 86 AND 87. BEFORE YOU GO ANY FURTHER WITH THIS QUACK WHO RUINED MY CHILDS LIFE FOR TWO OPERATIONS SHE NEVER NEEDED GET YOUR INFORMATION STRAIGHT AND CHECK THIS GUY OUT. LAST I HEARD FROM BARBARA WALTERS THOSE TWO QUACKS WERE ON THEIR WAY TO JAIL. BACK IN THE 80'S THEY WERE DOING 6-8 SURGERIES A DAY AT $100,000.00 A POP. GUESS WHAT THEY WERE MAKING! I HAD MY DAUGHTER CHECKED OUT AT JOHNS HOPKINS BY THE HEAD OF NEURO AND HE PROCEEDED TO TELL ME THAT THERE IS NO SUCH THING AS EPIDEMICS OF THIS CONDITION AS HENDEE TOLD ME. HENDEE SAID IT WAS CAUSED BY WHAT THE COWS ATE IN COLORADO! REALLY?

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