Extreme Makeover to Help Family With Chiari Malformation
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
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
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.
Juts wanted to say that Chiari does not kill . its the circumstances surrounding it.
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
I’m wondering if someone could tell me if there are any doctors studying the chiari malformation in Nebraska?
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
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.
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.
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
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.