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Terri Mauro

Extreme Makeover to Help Family With Chiari Malformation

By October 19, 2007

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As is its frequent habit, the ABC show Extreme Makeover: Home Edition will help out a family with special needs this week. This time, Ty Pennington (right) and crew will come to the aide of a Montana family affected by Chiari Malformation, a defect of the back of the brain in which pressure may be put on the spine and spinal fluid blocked.

Julia Carter, the mother, has been diagnosed with the disorder and formed a support group, Chiari People, that provides help and information to patients worldwide. Julia's 21-year-old daughter, Jade, has also been diagnosed, and her two teenage daughters are showing symptoms.

Surgeries and medical bills had put such a strain on the family finances that their home was, according to the site of builder Jeff Junkert Construction, a "remodeled chicken coop." That home was knocked down and redesigned, with consideration to the special needs the family has now and in the future.

You can see what the designers come up with, and learn more about Chiari Malformation, on the show, which airs this Sunday, October 21, at 8 p.m. ET/PT on ABC. Or, go to the ABC site for the show starting Monday to watch the episode online.

Photo: Frank Micelotta/Getty Images
Comments
October 26, 2007 at 4:24 pm
(1) Sandra Older Parker says:

My mother called me, she was watching, I only caught the ending. I would like to talk with the family. My daughter was dignosed hydrocelphus at 9 months old. Had shunt placement at 10 months old, 5 shunt revisions within one year to date. At age 2 she was dignosed with Arnold Chiari Type I. We saw doctors here in Alabama and they said the risk out weighed the benefits. Finally we heard of Dr. Crone at Cincinnati Children’s Medical Center Hospital, we sent medical records, saw him and at age 4 he did Chiari Decompression. Shunt capped and at age 6 her shunt was removed. She now has a seziure disorder that we are trying to get under control. She is developmentally delayed. She has been through 2 years of kindergarten and now in first grade. Her mental age is about 4 years old. I would like to find out when you were dignosed and what has been done for you? I am trying to help my daughter write better, read and be more coordinated. Socially she is Ms. Social Butterfly, never meets a stranger. She realizes now that she is different from other children her age. She plays better with children younger than herself. Please put me in contact with this mother or family reprensative so maybe we can help each other. I have not been able to talk to another family that had the same as my daughter. Thank you in advace for your help.
May God Bless You and this family.
Sincerely,
Sandra

October 26, 2007 at 5:00 pm
(2) specialchildren says:

For Sandra or anyone else who wants to get directly in touch with this family — you might try making contact through the website Chiari People. There’s a contact form at http://www.chiaripeople.org/contactus.php.

October 27, 2007 at 7:11 am
(3) EA says:

Juts wanted to say that Chiari does not kill . its the circumstances surrounding it.

November 5, 2007 at 1:36 am
(4) Rhonda Hendricks says:

A co-worker of mine has a daughter with Chiari Malformation and does not have any medical insurance and cannot work due to the severe pain she is in daily. Does anyone have any idea;s on who can help her with the surgury and hospital costs?
Thank you !
Rhonda in Ohio

November 12, 2007 at 4:51 pm
(5) TARA says:

I’m wondering if someone could tell me if there are any doctors studying the chiari malformation in Nebraska?

December 17, 2007 at 2:14 pm
(6) britney says:

wondering if u know of any ns in louisiana i do have a c spine mri from a few months ago that shows ectopia of cerebellum is this diagnostic of chiari

March 9, 2009 at 2:31 pm
(7) kenneth paugh says:

ty my named is kenneth w paugh jr, i am a licenses massage theripist i was wonder if in any way i can help a family w/ chiari malformation.

March 18, 2009 at 8:00 pm
(8) Christine says:

Im only 16 and i had Chiari 1 malformation. They said i had no choice but to have surgery because it was to big (18mm as i was told by the doctors) which to them was very unusual because at my age was to big. Me and my family were very worried and hurt and could not stop crying in the doctors office but months went by and i had my surgery and now i am feeling better.

April 7, 2009 at 5:17 am
(9) Andreia DUARTE ALVA says:

Hi everybody

I’am Andreia, I’am 25 years old. I Live in France since almost 4 years, but i born and live in Portugal before.
After, big headakes, and IRM exams, they discover me a Chiari Malformation with siringomyelie, last year.
The surgery is not a good option for me, and i’am having problems with my right arm and leg. But i have an angel as husband and he helps me a lot. It’s difficult to everybody who haves Chiari Malformation, but we will live with. We have to try to be postive, and tell ourself that it could be worst, even if i really know that it’s very hard.

Be brave and i wish God help everybody to be happy and live the better possible.

Do not hesitate to write me if you need to talk about that. andreiaalva@hotmail.com

April 16, 2009 at 9:46 pm
(10) ebrattin@alltel.blackberry.com says:

I have had migraines, aweful back pain, neck pain, loss of vision, days when I couldn’t get out of bed without help, arms and legs going numb for about 15 years. Many many MRI’s later I was diagnosed with chiara malformation. The most interesting part was we were having our Sunday dinner the night before I was to go to the neurologist to find out what was happening to me and we turned on extreme homemake over! There was the Carter family! Everyone sat down and no one said a word we all watched and cried. The next day I was diagnosed with this rare condition and was scheduled for surgery within two weeks! It will be a year April 25th since my surgery and all of my symptoms have improved greatly. I can go outside and do yard work with my family and a lot of things I have not been able to do in a long time! I truely believe that show was on for a reason that night! Just wanted to share.

February 24, 2010 at 12:47 pm
(11) M.V. says:

Hi I feel for everyone here. My husband is in the US NAVY and we just found out he has the Chiari 1 malformation and as of right now no surgery is being talked about but his Military Career could be ending in medical separation sometime this year…We have 3 beautiful children 10 almost 3 and 1 and I was just wondering if it is possible for our children to later on have this disease? We watched this episode last night on CMT and I have to be honest untill then I really didn’t think it was that big of a deal but I was way wrong all we did was sit and cry. God Bless Everyone. and if anyone happens to know how to contact the Carters I would really love to know Thanks!!!

February 26, 2010 at 8:30 pm
(12) Tonia says:

M.V.

I know from a personal level how scary and how difficult Chiari can be. I, as well as my son, are Chiarians and both of us have had surgery for it. I battled with myself for years because my son was diagnosed first. I went through SUCH a battle of “what did I do to my baby?” and “what could I have done differently”. I always wondered what happened that caused such a horrid thing to happen to him. I wouldn’t know until 5 years after he was diagnosed, that I would get the same diagnosis. Chiari can be diagnosed in young children as well as in adults. Alot of people live their whole lives and don’t even realize they ever had Chiari. Only until the symptoms show does a person realize something isn’t right. We were blessed to be able to work with a world famous pediatric neurosurgeon in Cincinnati. He performed my sons surgery. I was also blessed to meet my neurosurgeon who is located in Louisville, KY. I have dealt with Chiari for over 10 years now. Sadly, my son was also diagnosed with Epilepsy the same year as the Chiari diagnosis. Please just be thorough in your doctor appointments. ASK ASK ASK questions. It got to the point with us that I had done so much research on Chiari, my son’s doctors were awe struck. :) If I can be of any help, don’t hesitate to email me. tonia1969@gmail.com

God bless you all!

April 8, 2010 at 2:43 pm
(13) DRI says:

I am sitting here and reading each and every entry, felling the saddness that you all have felt. I was recently diagonised with Chiari’s in February. Looking back I’ve had symptoms for many many years. Looking at an old MRI from 2006…the Chiari’s is clearly there but went undiagonised because lack of knowledge on it. I went to a neurologist to see about my back but because of some of the sympthoms I had, he scheduled me for MRI of my brain, neck, and back. I went back a week later to get the news and was just flabbergasted, my heart sunk to the floor. I went through a lot of emothions because the doctor told me lets fix the back first then we can worry about the Chiari’s. I had surgery on my back a month later due to some family emergencies, but during pre-op everyone was asking me about the Chiari’s then after the surgery while still in the hospital, I was still getting asked about the Chiari’s. I am very worried because some of my children are showing signs of it too. How do I press the issue with their pediatrician to have them tested, because I want ALL of my children tested. My oldest is showing MANY signs and I was about her age when I started showing signs.
May God Bless Everyone!

April 15, 2010 at 11:23 am
(14) Pamela says:

I have been put on topiramate 100 am and pm for migrains.had a scan done,just showed that my scerbelum was very low.nerological doctor didnt know if it was like that when i had my first one done.my body,back always hurt,i take alot of advil ontop of it all.should i be tested for this .i am concerned.

September 3, 2010 at 9:42 am
(15) Stacey says:

I watched the rerun episode of the family with Chiari. I was recently diagnosed and I am scared. I have 3 children and I am scared to death that they will end up with this also. I am soon to be 39 years old and have had symptoms since high school. All the doctor’s have ever done was treat the “symptoms” and send me on my way. I took having a ruptured disc in my neck and the continuous pain afterward for the Chiari to be found. I am soon to be let go from my job because I am out of time. My insurance will be too high for me to continue to carry and my husband has been off work in order to take care of me. I can not walk down the hallway with out getting lightheaded and sometimes blacking out. We don’t own our house and our landlord has just informed us that if we cant come up with the rent on time, we will have to move. We have no where to go and he is aware of the situation we are in. So on top of the fear of this upcoming surgery and the fear of being homeless, I am beyond know what to do. I would love to make contact with the family on this episode but when I go to the website, it takes me to links. I need a good support group that I can vent and cry and chat with others dealing with the same thing.

September 3, 2010 at 10:00 am
(16) Terri Mauro says:

Stacey, here are a few online Chiari support groups you can try:

http://www.dailystrength.org/c/Arnold-Chiari-Malformation/support-group

http://health.groups.yahoo.com/group/chiari/

http://health.groups.yahoo.com/group/ChiariConnectionInternational/?v=1&t=search&ch=web&pub=groups&sec=group&slk=2

If you’re looking for an in-person group instead of an online one, I’d still recommend joining one of those online groups and asking how to find a group in your community. Your doctor or hospital should also be able to provide some information on that. Good luck!

September 10, 2010 at 6:51 pm
(17) Sally Turner says:

I have always had issues with balance numbness passing out on a moments notice, but until 1999 I had never had an MRI. I was having nerve twitching and balance prob.s so my family doctor ordered and MRI and found my chiari Mal. 1. He told me there wasn’t anything to worry about. Since then the symptoms have gotten alot worse. Dr.s in the ER never took me seriously and I have been to counceling and on meds for depression and anxiety. I recently had 2 more MRI’s because my neurologist thought I was having mini strokes. NOT…..My chiari was 4mm 11 yrs. ago but is 7+mm now. I have severe bursts of pain when straining to use the bathroom and am off balance alot. I have to watch how much weight I lift or pull at work because I have severe pain flair ups down my back with sharp shooting pain going up my spine to my brain. My nurse practictioner has a friend that had the surgery and realized that the symptoms I have are coming from my chiari. God Bless Her…..I am seeing a neurosurgeon on Sept. 16, 2010 in Columbus Ohio. My friends and family have watched this make over show and they are now realizing what I am going through and what could happen to me down the road. I have been silent for so long afraid someone else will tell me I am crazy just take another pill and get over it.

November 5, 2010 at 11:38 am
(18) cherrie says:

my name is cherrie im 30 yrs old and i have been recently diagnosed with chiari 1 my mother had the surgery for this in 1994 when it was still very new to people. the surgery was only the 3rd one for her dr. im having a difficult time getting help with this because i do not have insurance im also afraid for my wonderful 11 yr old son im not sure if or when i should start getting him screened for this or even if they can screen him or just wait to see if he starts getting the symptoms. Right now my biggest battle is being able to funtion at work because i take care of mentally and phisically diabled adults i have to be on high alert at all times. Does anyone know if there is any help i can get for this in Kansas i would really appreciate the help. For now im hanging in there and praying everyday that my son doesnt go thru this. Thank you in advance for any advice or suggestions

March 17, 2011 at 10:13 am
(19) Almudena says:

i am a mother of a child with chiari thanks for being so that family and thanks for helping Xtreme makeover

May 14, 2011 at 8:23 am
(20) verda says:

My 3 year old daughter has just been diagnosed with arnold chiari malformation. We havent been to the neurosurgeon yet but going soon. Im still holding out hope that the docs are wrong. She has already been through so much in her short little life, but she is a trooper! I wish that I had half the strength that she does. I hope to know more soon.

May 26, 2011 at 8:47 pm
(21) Nate says:

I have Chiari malformation, misdiagnosed for literally years and years,even labeled as a drug seeker because of course a 17 year old male teenager who is athletic and handsome complaining of horendous pain is just trying to score drugs or is trying to get out of school. The medical community should be ashamed at the way they treat ACM/SM patients. My local yokel neurosurgeon is equal to a primary care anywhere else where there is competition over jobs- he SAW the darn syrinx and said it was an uncaused birth canal!!!. The idea of country doctors being better is mostly a myth,any specialist that lives in the country has either been bribed by the hospital or can’t compete elsewhere.

August 22, 2011 at 12:00 pm
(22) April says:

Help, help, help! My 21y/o daughter has chiari and is symptomatic with cardiac arythmia, venous insufficiency, 40lb rapid weight gain due to edema, tremendous pain and more. She has scoliosis with both curves at 50 degrees. We have lost everything in our search for help and with my military pension are now living in hotels willing to go wherever someone is willing to give her the surgery she needs without having medical insurance. We have MRI and full course of medical records documenting new cardiac problems, full endocrinology work up, etc. Please, is there anyone out there who can help? 727-688-2244 Respectfully, April Anderson (retired USMC )

August 22, 2011 at 3:35 pm
(23) specialchildren says:

April, have either of these organizations been of any help to you?
http://www.usmc-mccs.org/efmp/
http://www.stompproject.org/default.asp
It might be worth contacting them just to see if there is some help available for extraordinary circumstances like yours. You might also contact the Chiari and Syringomyelia Foundation at http://www.csfinfo.org/ and ask about special programs or assistance.

August 25, 2011 at 11:04 pm
(24) Kati says:

I just watched this episode today for the 1st time. I was very interested in listening to them. I wish I had seen this before I was diagnosed with Chiari also and had my brain surgery 9/10/09. I’m totally gonna check out her web page!!!! Thanks so much for showing this again so I could see it.

August 25, 2011 at 11:17 pm
(25) Kati says:

I tried the website and it says its no longer there. To all of you that are facing the possibility of this, or facing the surgery, it is normal to feel scared. I went thru this at 28 as a single mom of a 2 year old. I have lost everything that we had in the last 2 years, but never gave up hope. I finally won my disability case and was able to rent a house for me and my son!
Lean on your family and friends because you will need them!!! They are going to be the ones to give the most support.
If anyone has to have this done in Springfield, MO the best neurosurgeon is Dr. Sami Kyoshomon at St. Johns hospital.

May 11, 2012 at 1:11 am
(26) Chiari victim and Mother of Chiarian says:

To the 3rd comment, EA….. Chiari “CAN” kill. It took the life of 4 people this year.
It can damage your life more than you think!!
I have it and my daughter has it. My daughter had it so bad, that it caused many other problems. She has permanent spinal cord damage. She had to have surgery with in days of finding out because it WAS THREATENING her life.

July 15, 2012 at 7:37 pm
(27) kim barnes says:

my name is kim and I found out in 2009 that I had chiari. im so scared and I have no medical and I need help. and dont now what to do

July 20, 2012 at 7:46 am
(28) specialchildren says:
August 22, 2012 at 10:20 pm
(29) Kara says:

I too have Chiari and so does my children. So glad to see awearness coming to this horrible disease. I’m a paramedic and I make my career by helping others but I can’t help myself or family. I understand the expense that comes with this horrible disease. BesT wishes!!!

April 16, 2014 at 3:04 pm
(30) anjelica says:

Hey everyone i just watched the episode and loved it my hubby is the one who was acually watching it and told me about it. Our baby who is now 3 was diagnosed last year but its been a long and rough bumpy road since his birth. We are expecting a surgery soon but trying to locate the right doctors which at the moment are very far away. I just wanna say keep up your strength. Especially when it comes to your baby is sooooo hard believe me i know thrre are days i want to pull my hair out juat getting the runn around it hard . Nathan (my son) also happend to havr seizures which are not fun i cannot count how many timea i havr had to do cpr to make him breathe. And also has an arachnoid cyst located on the left side of his brain. Some times i jut sit in my room and cry and cry and cry why should a lil toddler have so many problems? I am just trying to keep my head up high be strong for my baby and look fpr the light at the end of the tunnel if anyone wants to talk you can email me i know alot about chiari. Even if you wanna vent im all ears:) duhjelly8@gmail.com

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