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Meet the 3-Year Old Boy Who NEVER Sleeps!

John Eagan

Story Created: May 9, 2008 at 6:29 PM EDT

Story Updated: May 9, 2008 at 6:51 PM EDT

     If you think you've got it bad, wait until you hear about this child, who never sleeps!
     The parents of 3-year old Rhett Lamb knew something was not right from the day he was born.
     Something has been keeping him awake for his entire life.
     But that all may be coming to an end.
     Rhett is at a hospital in Florida to undergo surgery for a brain condition called Chiari Malformation.
     His parents hope it is the answer to the rare condition that has turned their lives upside down.
     His father David left his job to stay home with his sleepless son.
     While mom Shannon works full time to pay for Rhett's ever-increasing medical bills.
     ABC 6 anchor Tom Langford has the amazing details... 

1:30 PM Breya Lee wrote ...

That seems really H A R D ! I give full props to the parents. That seems so hard...i swear. But how do the parents sleep???? Like literally!

5:20 PM SJ Rodgers, Eugene OR wrote ...

I also recommend seeing the free, online, state-of-the-science, Chiari education videos produced by world-class Chiari experts at www.thechiariinstitute.com. It is very important for Chiarians to know as much as possible before committing to a treatment plan. Do your homework and listen to the experts' explanations. Then share the information with your local nonexpert docs; you'll help the next Chiarian on this path.

9:48 AM Judy wrote ...

My 25 year old daughter has Chiari Malformation and thank God it did not give her trouble as a child, however, she will undergo surgery soon. It was discovered at 18 when she had an MRI for another problem. They did not expound on it at the time. I cannot imagine having dealt with this during her formative years. She will have surgery soon, the neurological team are very hopeful in her case.

Sunday, May 11 at 10:22 PM Dyanna Phetteplace wrote ...

Hello all the way from Klamath falls Oregon. I too have Arnold Chiari Malformation. I was born with a lazy eye and double vision and numerous other issues i remember not sleeping when i was a child and in an out of the Doctors offices and hospitals. Now i am 30 and the worst has been since 2004, and i was finally diagnosed in Feb of this year. My surgery is scheduled May 21st. My thoughts and prayers are with you and your family and may Rhett have a speedy recovery to a pleasant childhood.

Sunday, May 11 at 8:25 PM Nicole wrote ...

We are a family of 4 Chiarians. Surgeries done by well-meaning, inexperienced neurosurgeons(re:Chiari) can leave the patient frustrated. Many find out later it failed – Under/over correction is often the culprit! TheChiariInstitute @ NorthShoreUnivHosp offer 16 hours of free educational videos at www.chiariinstitute.com There is SO MUCH TO LEARN about Chiari & how other related conditions can add to issues a patient faces. In the spirit of paying it forward, Nicole@pristinewellness.com

Sunday, May 11 at 12:30 PM megan rite barrington rhodeisland wrote ...

i think this disease is so stupid i have lived with it

Sunday, May 11 at 10:43 AM Evie Vastis, Lakemoor, IL wrote ...

Hi, My daughter suffers from Chiari Malformation. She has had 8 surgeries since she was diagnosed in 2006 when she was almost 13 years old. One of the surgeries caused brain damage and she woke up paralyzed on her left side. it has resolved, but not completely. She has a learning disability and she has balance problems. She is stable right now, but lives with constant headache pain 24/7. She also has Juvenile Myoclonic Epilepsy (JME). Thank you for the story. Good Luck Rhett!

Sunday, May 11 at 1:41 AM kristie anderson Lewistown Pa wrote ...

Hi first I understand what you are going through and you have my thoughts and prayers. I have Chiari my self born with it found out about it in 1999. Really been through the ringer since 2002. feel for Rhett and hope he has an easier road than most of us who are dealing with this disorder. I am glad this is starting to make headlines awareness of this needs to get out and something done to help the many who suffer. Have a blessed day and hope Rhett is doing as good as he can. UI am in Pennsy

Saturday, May 10 at 4:54 PM Kimberly Cox wrote ...

Hello all the way from west of Chicago,IL. I am also excited for the awareness of Chiari Malformation. Iam 32 and it has been hard. Luckly I have a wonderful dr that understands what Iam going through. Chiari is hard to live with. I will keep you in my prayers. God bless you and your son.

Saturday, May 10 at 12:54 AM Jo-Ann wrote ...

I am so excited for the awareness of Chiari Malformation getting out there. I have a son who is 13yr old, has Chiari. He has underwent 2 "decompression" surgeries within 8 months. He will be having another soon. Finding doctors and surgeons who know of this condition is difficult. I am blessed to have a pedi that cares. Chiari Malformation has over 85 symptoms, mainly headaches. My son has been in and out of school for 1yr and a 1/2. He was just granted a wish through the Make A Wish Foudation

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