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« Michael's Extreme Makeover Blog
The Carter Family
This week we're in Billings, Montana, to meet the Carter family. Lon, Julie and their three daughters Jade, Sapphire and Lily. Montana's Big Sky country — brutal winters, hot summers, rattlesnakes and chicken coops. The Carter family actually lives in an old refurbished chicken coop — really a chicken coop — they've tried to make the best of their circumstances, but living in that chicken coop has not been easy. Lon's done everything he can to fix it up and make it as good as it's gonna get, but we can do a lot better.
As bad as living in a chicken coop is, it's not the only hardship facing this family. Julie and her daughters all suffer from an extremely rare condition called Chiari Malformation. Chiari Malformation is a condition that has over 85 symptoms, making it very easy to misdiagnose. Many doctors claim patients are just depressed or have chronic fatigue syndrome, but this disease is real and afflicts more than 250,000 — most not knowing they have it. Julie Carter is a pioneer and has helped thousands worldwide get a proper diagnosis and provides them with support and compassion. Julie is a hero to thousands, providing a monthly newsletter to Chiari patients and giving them valuable information, helping to spread the word about this disease and getting the help to those who need it. This is why we are building for the Carters this week.
My projects this week are the great room, the kitchen, the dining room and Julie's office. My goal was to make these spaces as comfortable and family-oriented as possible. No jarring colors and taking into consideration everything I need to about their light sensitivity and all the unique symptoms of this disease. To give Julie an office, I'm providing her a place where she can continue to do what she does with her newsletter and help people understand this condition without giving up her master bedroom in the process.
Joining us this week was Jeff and the entire team at Jeff Junkert Construction, and they absolutely knocked this one outta the park. The week was seamless. It was smooth. There was no drama. This house — the quality of this house, and the magnitude of it — is unbelievable. The people of Montana were fantastic also. They were just so focused, so driven. Everybody was willing and helpful — what a fantastic community.
The Carter family is one of those families who have bonded really deeply. There's a bond that's very special there, you can just see it in the way they interact, the way they hold on to each other and hug each other. There's a lot of love in that house, Lon and Julie are amazing parents. And those three little girls are gonna grow up to be pretty amazing adults.
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Oct 19, 2007 3:44 PM
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Hey michael, was the chicken coop that the family was living in really a chicken coop? Like, how bad was it? Was it a 6ft by 6ft room. Or was it more like a big barn? With a number of rooms but without like running water or anything? I also wanted to say that you guys kick butt!
~Olivia~
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Oct 20, 2007 7:04 PM
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Michael - watch your show every week and cannot say enough about the good work that you and the team does for people in need and who have served their community. Can't wait to see this episode - keep up the good work.
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Oct 21, 2007 2:37 PM
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This is a great FAMILY show. My kids love to sit down every Sunday night as a family and watch "Extreme Makeover - Home Addition". Thanks!!
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Oct 21, 2007 5:01 PM
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Thank you for featuring Chiari malformation. Our daughter had surgery one and half years ago. Hopefully many people will see your show and find answers to their health problems.
Leon and Hope Woods
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Oct 21, 2007 8:51 PM
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I understand fully the implications of Chiari Malformation. I was diagnosed with it as well as Syringomyelia after a car accident.
I have Sm from the C1- T5 area. Last we knew it was ever slowly absorbing back into the body. Though the CM is congenital the syringomyelia is a result of the CM.
I had decompression surgery in 2004.
I wish the symptoms would disappear as well. I do feel blessed that I don’t have more problems. Pain of course is at the center of everything I do. Or have to weigh in if it is worth the price doing. I deal with a gait disturbance and weakness in the extremities. Just in the last few months i have sustained to fall. One where I passed out and hit my head on the floor. Luckily so far I have not seen any major changes in my body.
I just wanted to put my two cents in . I hope that more exposure to this debilitating disorder is shown. That maybe a cure or at least a lessen of symptoms can be found
Thanks
Donna
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Oct 21, 2007 9:50 PM
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I understand fully the implications of Chiari Malformation. I was diagnosed with it as well as Syringomyelia after a car accident.
I have Sm from the C1- T5 area. Last we knew it was ever slowly absorbing back into the body. Though the CM is congenital the syringomyelia is a result of the CM.
I had decompression surgery in 2004.
I wish the symptoms would disappear as well. I do feel blessed that I don’t have more problems. Pain of course is at the center of everything I do. Or have to weigh in if it is worth the price doing. I deal with a gait disturbance and weakness in the extremities. Just in the last few months i have sustained to fall. One where I passed out and hit my head on the floor. Luckily so far I have not seen any major changes in my body.
I just wanted to put my two cents in . I hope that more exposure to this debilitating disorder is shown. That maybe a cure or at least a lessen of symptoms can be found
Thanks
Donna
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Oct 21, 2007 9:53 PM
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Hello my name is Whitney, I only caught the last part of the show but what I heard is very important to me. My dad has charii malformaltion and we can not find alot of help with it. Can you please forward me the link so i can get the newsletter and information from the Carter family. It would mean so much to my family and me too have a network to speak with about this condition. Any help you could provide with contact information would be so appreciated. thank you for all the good things you do to help these families you are angles caring out hte work in Gods plan. God Bless
Whitney
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Oct 21, 2007 10:14 PM
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Wow! The Lord works in mysterious ways.
Three weeks ago, I had never even heard the work Chiari.
On October 13th, we took our 15 month old son to Primary Children's Hospital in Salt Lake City, UT for an MRI.
He is not walking, crawling, rolling or even talking.
The MRI has shown that he has Chiari 1 malformation.
We are meeting with the doctors again on the 8th of November.
I would guess that they are going to talk to us about our options.
I have read a lot about Chiari in the last fourteen days, and then to have my mother in law call us and tell us that they were featuring this family on Extreme Makeover, wow, tears came to my eyes because I know that we are being watched over.
If anyone can relate to my situation, or has gone through the process of having their 15 month old going through this, I would appreciate some information and some advice.
Thanks!!!
P.S. I just happened on to this page, so I hope this shows my email in order for you to reply.
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Oct 21, 2007 10:31 PM
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This was an amazing episode. It just so happens that my husband has Chiari Malformation and had surgery in March. When we watched the program our hearts went out to this family as not only does Mrs. Carter have this disease but so do her children. You are in my prayers!
I would like to know what her website address is so if you could give me that information, I would appreciate it!
My hat is off to Extreme Makeover for doing this for a very deserving family. Keep up the great work!
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Oct 22, 2007 8:51 AM
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I was really inspired by the show last night and my heart goes out to the family that was featured last night. My son was just diagnosed with Chiari I Malformation and I would really like to know if there is any way that I can get in touch with Julie Carter because she was such an inspiration to me last night and she has given so many people hope. Please let me know. I would really appreciate it. TKS Tabitha
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Oct 22, 2007 10:23 AM
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Thank you Michael. As a Chiari patient, you do not know how important what you've done is to us. I am a journalist in Georgia and I live everyday with this. Your genuine emotion and concern really meant something and getting this information out the public may make it easier for another patient in the future.
Often we face being told we are hypochondriacs or that we have mental problems - that it's "all in our heads." On top of the pain we are suffering through, this is yet one more devestating thing to face. Family members can't understand and expect that after surgery you are cured, however, it doesn't work that way. So, for those of us out here alone facing this, we sincerely thank you.
Marla Pretty
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Oct 22, 2007 12:37 PM
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I was watching the show last night on Chiari Malformation and my granddaughter just had surgery last week on this and she is better and went to school for 4 hours first time today she has been sick since she was 7 years old and they have just found it. Its a miracle it was found.She was so glad to hear about the Carters. Please let us know her web site so we can get in touch with her.
Thanks
Vallie Molony
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Oct 22, 2007 3:41 PM
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i thought that the family that was on really didn't seem like they needed the help from your show. i have seen other families in more need of your help than this one. it was sad that they were sick but it seemed as though they were living in that "chicken coop" by choice.
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Oct 22, 2007 4:16 PM
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THANK YOU!!!!!!!!!!!!!!
I WAS DIAGNOSED WITH CHIARI WITH SM IN MAY 2007.I HAD SURGERY ON JUNE 5TH 2007. SOMETIMES WHEN I TELL PEOPLE WHAT I HAVE I THEN HAVE TO EXPLAIN WHAT IT IS. I REALLY NEED MORE INFORMATION BECAUSE SOMETIMES I DONT UNDERSTAND WHAT IM SAYING I JUST REPEAT WHAT IM TOLD. I TRY TO RESEARCH THE INTERNET BUT IT GETS SO CONFUSING. PLEASE SEND ME THE LINK TO JULIE'S NEWSLETTER.THE TEARS DID NOT STOP FALLING FOR HER FAMILY I AM SCARED! MY DAUGHTER HAS SEVERE HEADACHES. AN MRI IS IN HER FUTURE. I JUST PRAY I HAVEN'T GIVEN IT TO HER. THANK YOU AGAIN FOR SHOWING THE PAIN WE SUFFER.
DONNA
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Oct 23, 2007 1:58 PM
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