Talk to us!
Thanks for visiting the website for the film, A Life Without Pain! Here is where you can drop us a note — let us know what you think, how you found us, etc.. Thanks!
- Melody Gilbert
Director, A Life Without Pain
110 Responses to “Talk to us!”
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Frozen Feet Films • Melody Gilbert • Park Building • 1591 Selby Ave, Suite 100 • St. Paul, MN 55104651.336.5111 • • www.frozenfeetfilms.com
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November 7th, 2005 at 2:15 pm
This film looks really interesting..when can I see it?
November 7th, 2005 at 11:09 pm
* NEW INFO* A Life Without Pain will be broadcast in the U.S. on The Sundance Channel on February 27th , 2006 in the evening (9pm Eastern Time).
http://www.sundancechannel.com/film/?ixFilmID=6802&rname=The+Film+Finder
Be sure to check your local listings for the time in YOUR area for the time and channel. Thanks! ~Melody (director/producer)
November 8th, 2005 at 6:42 pm
Wow! I just saw the piece that aired on Oprah. What an incredible story. I’m curious to see how the other families in the documentary handle this….I just ordered the dvd - I can’t wait to see the film!
November 10th, 2005 at 6:20 am
Melody,
I can’t wait to see the whole film. The clips on Oprah were simply not enough!
“Aunt Duck”
November 13th, 2005 at 8:13 am
WOW!!! I really think that this is very interesting. But I wanted to know when it will be on T.V?? Cant wait to see it . You did a great job on this.
November 14th, 2005 at 10:53 am
I just wanted to know when it will be on TV again. I think it is very interesting how this disease affects kids.
November 14th, 2005 at 11:34 am
Thanks so much for your interest and your nice comments! I really appreciate it– ~Melody
November 23rd, 2005 at 4:44 pm
wow that was amazing I never thought that pain was so helpful in life , I thought that pain was terrible because some times it could hurt really bad so I have all of respect and hope the best for all of the ones that can not feel pain.
November 23rd, 2005 at 4:47 pm
just wanted to say that I care alot about them and I believe in them that they can succeed in everything that they do
November 23rd, 2005 at 6:25 pm
wow! that is really someting!! i cant wait to see this film!!! lots of respect for these 3 kids!!!
November 23rd, 2005 at 6:27 pm
I am so sorry these children have to go through this. It must stink big time! Thanks for sharing it with the world-public sorry again lynne
November 23rd, 2005 at 6:30 pm
i think that this documentary is a good example of showing other people that their life could be worse, i feel bad for the children who have to endure this… because they have no idea what they are doing to themselves, i cannot wait to see the actual documentary
November 23rd, 2005 at 6:37 pm
After seeing a few clips about this disease on Insider, I feel that it is a great wake up call to the world. After a bit of researche i have found that this disease is currently only affecting about 100 people. Many people think that the problems they go though are so hard and so “painful”… but i think sometimes the best way to solve some thing is to feel the pain.
November 23rd, 2005 at 8:51 pm
I watched this clip on Insider tonight. I think it aired at a great time, the day before Thanksgiving. It made me realize just one more reason to be thankful. All of the children in this documentary are blessings from God. Thoughts and prayers go out to all of you!
November 23rd, 2005 at 9:27 pm
wow all this time without knowing what the good things of pain really were. now we feel that god has given us the gift of pain for a reason. you are probably thinking no i wanna get rid of pain. thats what we thought too before we watched this tape. now we know the true reason of pain.
November 23rd, 2005 at 9:31 pm
thank you for making this video it made me grateful
November 23rd, 2005 at 9:42 pm
I think the world should see this video. This made us feel like we should be grateful even for something that can hurt so bad. Now we know the true meaning of pain due to this video. It really helped us alot more then you can imagine. You always want to get rid of the pain but thats what we thought too, but after seeing this clip it changed our minds. It should change yours too.
Thanks!
November 23rd, 2005 at 9:58 pm
Wow I am grateful thank you I would also do anything to not have that disease wow I cant explain And I am sorry for their family.
November 23rd, 2005 at 10:05 pm
WOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I cant belive it I am astonished I hope the do find a cure
November 23rd, 2005 at 10:07 pm
i think that this documentary is a good example of showing other people that their life could be worse, i feel bad for the children who have to endure this… because they have no idea what they are doing to themselves, i cannot wait to see the actual documentary
November 23rd, 2005 at 10:26 pm
I saw the clip on the insider and I have to give thanks to God that some of us are lucky enough to get hurt and realize it. I pray to those 3 families in the documentary and the other 97 or so families out there who are enduring the same or worse. I will order the DVD and show my children, family and friends what is “Life Without Pain” so they can too appreciate what God has given us and we take for granted!
November 23rd, 2005 at 11:08 pm
I saw the clip in the insider on my jaw just dropped I could not believe that something like this ever existed. I give sympathy to the three families in the documentary and the other families who have to deal with this sad disease. It makes me appreciate what God gave me and my family.
November 24th, 2005 at 5:27 am
Hey, Im from the Philippines and im really intrested with this documentary. Will you be showing this in Discovery channel or something?
November 24th, 2005 at 11:24 am
i heard of this story and saw clips on the insider 11/23/05 im definitely going to rder this to discover the importance of pain and see how the families deal with this disorder
November 24th, 2005 at 7:40 pm
I saw the clips on Oprah it amazes me to see something that we find so terrible and it makes me realzie that pain isn’t that bad. I hope the best for these kids and the other who have this odd disorder. I can’t wait to see the film.. Hope they find a cure for this.. Your Friend Alyssa
November 24th, 2005 at 11:39 pm
I saw the story about one of these children on television recently. I must say that I can relate very exclusively to these kids as I had this condition temporarily until the age of 11. I can remember all the things associated with having to deal with this condition. Wearing a head brace to keep from giving myself a concussion and so forth. Luckily it’s something I have not had to deal with since early childhood. I truely sympathize with those that have a child with this condition, and of course with the children themselves. -Daniel
November 25th, 2005 at 8:07 am
this is the saddest thing i have ever seen, i wish the families good luck.
November 26th, 2005 at 9:54 am
i just want to say good luck for the parents and the children … it’s so sad to see little innocent children living with this… i wish this disease didn’t ever exist.. i just want to say good luck !
November 26th, 2005 at 10:01 am
I WISH ALL THESE KIDS THE BEST. GOD PUT U TO A TEST AND YOU WILL SURVIVE IT . DONT BE AFRAID. DONT BE SAD. BE STRONG
November 27th, 2005 at 12:28 pm
hearing about this film made me want to see it badly…. and now reading about it, and reading all those reviews… makes me look forward for it more and more. i hope it screens in the middle east soon.
November 28th, 2005 at 11:43 am
What a tragedy. I feel for the children that have this disease. May God bless all of you and keep you strong.
November 28th, 2005 at 9:20 pm
Chris, Gabs was just adorable on Oprah….You have a great little neice there…and K.T. was just as sweet!!! Give them girls a hug!!!
December 3rd, 2005 at 7:57 pm
I had been meaning to see this film for several months. After finally watching it, I can honestly say that it is one of a kind. I can’t think of many other films with such a dynamic emotional arch. It is truly unique, heartbreaking, gorgeous, painful and, ultimately, inspiring.
I’m so glad I finally saw it.
December 7th, 2005 at 6:16 am
The feature in oprah was moving. i was actually hoping i could see it but i live somewhere far away. i suffer from GAD and it makes me think twice of depression and my old wish to one day wake up real numb. life’s all different for me now
December 9th, 2005 at 10:53 am
This was my first time hearing about disease. It’s so sad to see any child having any type of disease. Much love sent your way and God Bless.
December 9th, 2005 at 1:25 pm
I’ve known Gabby’s parents for many years, and I just have to say that, despite the difficulties her condition brings, God could not have blessed that little girl with a better family. Steve, Trish and Katy are truly amazing people and I’m very fortunate to know them. You guys are the best.
December 9th, 2005 at 7:26 pm
I have an 8 year old that I am convinced has the same condition. She was born with Hydrocephalus and all the doctors have brushed off her lack of pain or high tolerance for pain as being a result of the Hydrocephalus. Seeing Gabby on GMA this morning, I saw many similarities between her and my daughter. She is constantly falling, bumping into things, having to get stitches with no reaction at all, where a normal child would be screaming blood murder. A good example of what she has endured was this summer when she wanted to smell what was frying in a pan and her lips touched the hot pan. No reaction. She also has visual issues because of scratched corneas, mostly due to self infliction when she was younger. I am EXTREMELY interested in finding out how to get in touch with Gabby’s family or the doctor that diagnosed her. Any help you could give me would be very welcome.
December 10th, 2005 at 3:36 pm
we think that theses kids and their families have been through more pain than they could imagine even though they can not feel pain. we really would like to say that you all are doing a great deed letting people understand what you all are going through.
December 10th, 2005 at 5:32 pm
I saw this on the news and i was touched by this tragedy happening to this family. I wish everyone in the world knew about this so people could care more about the people around them and everyone needs to know how bad things are instead of little problems like: not making a good grade, or having a bad hair day.
December 10th, 2005 at 6:58 pm
Wow,this is really interesting i never knew it would be possible.
December 11th, 2005 at 1:26 am
i didnt know there were people who could not feel pain. i used to think that i didnt want to feel but now i see that some people cant feel i feel bad for them and that i felt like that.
December 12th, 2005 at 4:57 pm
SO sad I almost cried……Good luck to all of those people out there who can’t feel pain
December 12th, 2005 at 8:42 pm
I’m really interested in seeing it when it comes out… it looks truly interesting!
December 13th, 2005 at 8:40 am
i am a normal 13 year old girl who is really interested in these things .
i think its a good thing that she can’t feel pain and also bad thing :if she could feel the pain , she wouldnt hurt herself more , so it’s confusing.
thank god this child has a gift…it’s a blessing …something important
December 13th, 2005 at 10:19 am
Where can i find more information about this illness?
December 13th, 2005 at 11:07 am
For more medical information, you could start by cheking out the following website : www.gift-of-pain.org
That’s the site for the foundation that Gabby’s parents started to share medical information and connect other people with CIP (Congenital Insensitivity to Pain). Hope this helps! And thanks to all of you for comments. I appreciate you all writing to let me know your reactions to the documentary.
December 16th, 2005 at 2:57 am
Will this movie be shown in any Minnesota theaters sometime? I am really interested in seeing it.
December 22nd, 2005 at 5:21 pm
Hi Vanessa
I will proably be having a screening in Minnesota/St. Paul area in February. I’ll post the info here when I have it! Thanks for your interest. ~Melody
January 3rd, 2006 at 3:05 pm
I was watching t.v, and I came across Oprah. I had never watched this show very much, but it was like I knew that that day, something on the show would really matter. I saw a beautiful little girl named Gabby who was so happy and full of life. I began to hear her story, and I knew right away that she was a very special little girl. SInce I watched Oprah that day I have been wanting to find out more about Gabby and the few others like her. I havent seen the film yet, but I think it is one of those documentaries that would make bitter and selfish hearts warm. If anyone could give me some info on how to help, or learn more on the rare condition, I would greatly appreciate it. Thank you and God Bless
January 4th, 2006 at 9:47 am
Hello. I was fascinated by your film. Our daughter seems most similar to Jamillah. C will fall and scrape off a large patch of skin on her knee and not notice until she sees the blood. Then she insists on cleaning up the wound herself and doesn’t flinch the entire time. She once dislocated her elbow in PreK and the teachers didn’t call us until lunch time (she had apparently dislocated it several hours earlier during a tussle with another child) when she wasnt’ using the arm to eat. They felt very badly when they realized the elbow had been dislocated that long without them realizing it. C never tells us when she is sick or dizzy (she has vertigo spells). She did seem uncomfortable after her T&A so she must feel pain somewhere, somewhat. We are in the process of asking her neuro and pediatrician questions. C has PVL so lack of pain perception might be because of her brain injury and it might not. C can not tell who is who by face (she has CVI) and that was hard enough to get the Drs. to believe. This seems even more fantastic than CVI with normal acuity. Michelle
January 19th, 2006 at 6:28 pm
I think it’s wonderful that those children can survive without pain. I wish all of them the best. My thoughts and prayers go out to all of you. God bless….
February 3rd, 2006 at 12:21 pm
I hope these children are happy wherever they are. They deserve all the happiness in the world. I hope people find a cure for this… Thanks for sharing.
February 3rd, 2006 at 4:41 pm
Wow, i just read an article in some newpaper. I feel so sorry for these people, im a seventh grader at HFL and i work alot with the kids who have disabilaties, the kid in the little clip looks really happy… we i really hope all goes well for you, best of luck, Frankie
February 3rd, 2006 at 8:46 pm
I have a cousin that is in his forties now and is one of the longest survivors with this defect. If you want a story you should report on his life through the early years when they didn’t have the knowledge they have now, to still against all odds to be alive and working in this day and time.
February 3rd, 2006 at 11:13 pm
My grandaughter is now age 13 she was diagnosed with fifth and eighth bi-lateral nerve damage. Thus she is profoundly deaf along with not being able to feel any pain in her facial area. she does seem to feel pain in depth but is similiar to the cases you speak of however Drs at New York University of Medicine Dr Felecia Axelrod is top of the field in this area she thinks maybe our grandaughter has something called HASA. Chelsea had many injuries to her faciel area she was also decelopementally delayed and did severe backward extensions. She would arch her tiny body with such strenght we were ubable to streighten her. There are so many things we went through with Chelsea and continue to go through but GOD has helped us so much. For those of you who have younger children we had a jacket made for Chelsea as a toddler and we used tounge depressors to keep her from being able to poke her eyes out. Even with all this she still managed to leave her self legally blind in the left eye and very bad vision in the right eye. I have sen also Chelsea fall and get hurt and want to cry but she produces no tears so the doctors preformed a surgury to permenantly seal the tear ducts to keep whatever moisture she did have in her eyes this has helped. There are many things we did to help her along the way to keep her safe. We never allowed her to lie down alone for feasr she would poke her eyes out or she would headbang and bust her head open. The worst thing was finding Childrens Services on our doorsteps when the corneal surgeon thought we were abusing her because of the constant scrapes om her forehead but she would scoot across the floor and do this so it was a constant battle. We stil watch her very closely to prevent her from doing further harm . If we can help anyone please e-mail me I was so comforted to know that we were not alone. Thank you and GOD BLESS YOU
February 5th, 2006 at 11:21 am
Wow, whenever I hurt myself I think, I wish the pain would go away, I need it to stop. Now I realize how lucky I am to have pain! this is amazing, I can’t wait to see it! I can’t wait until July!
February 5th, 2006 at 12:34 pm
Julia…you don’t have to wait until July. The U.S. broadcast premiere of A LIFE WITHOUT PAIN will be on February 27 on the Sundance Channel (www.sundancechannel.com). Check the listings there to find out what time it shows in your area. Thanks for writing everyone!
February 8th, 2006 at 11:27 am
GOD BLESS ALL OF YOU! THIS DOCUMENTARY IS GOING TO CHANGE THE WORLD. THANK YOU FOR ALLOWING US ( THE VIEWERS) TO STEP INSIDE OF THE LIFE OF SUCH WONDERFUL PEOPLE!
February 10th, 2006 at 3:28 pm
I saw this first time on CNN. That did remind me about our 2nd child (son) who is by this time 7months. I remember, when I took him to the doctor for 2m check-up, he didn’t even cry when he was given shots on his two thighs. I remember, I asked the nurse about it. She was even surprised. Same thing happened during the check-up at 4m. Then I asked the doctor about it,”Does he really have any feeling in his legs?”. The doctor even was surprised. I was not that worried though, because I didn’t have any idea about it. Then when I saw this news I immediately called my wife to check on various ways whether our son is responding to or not to the pain. Whatever she did, I was not satisfied. Then during the 6m check-up I saw him crying and did give thousands of thanks to the GOD that my son is lucky to have that valuable Gift from HIM. But I still watch his every movement whenever I’m with him at home. Our mind and support are always with those children here and their families. Personally I have found a new definition of life after I read this news on CNN and thank GOD every moment for that great GIFT. Hope someday those children would get it by some miracle event. I’m sure about it. I’m praying so every moment for those children. GOD be always with you all.
February 28th, 2006 at 6:12 am
I just finished watching this very important documentary. I am a Registered Nurse of 23 yrs., and have witnessed so much pain in others over these years…there are times when I wonder why on earth I stay in this profession. Well, this documentary reminded me.
I never thought I could learn so much from 3 children. As an adult, and an ‘educated’ medical person, I’m supposed to know so much. Thank God, for these girls-they’ve opened my eyes. I’m one of those stupid people who would have been quick to rush to judgement regarding how these kids were being treated at home (instead of looking deeper) had I NOT watched this film.
The only negative? (Except for what the parents and their kids in this film have to go through every day)- 1) The self-indulgent use C.I.P. to “self-diagnose” themselves, to have yet another ‘rare’ disease, or 2) Doctors, and nurses don’t get to see this film and understand this condition early in their careers!! (so that on the very rare occasion they do see C.I.P. they will recognize it).
Thank you Melody, for the education!
Janet Bellware, RN, BSN
March 1st, 2006 at 12:30 am
I am a pre-med student and saw the documentary on tv last night…the documentary moved my in numerous indescribable ways. Thank you for making this documentary to educate the public about this incedibly rare disorder, hopefully with the publicity received more funding will go towards research on congenital insensitivity to pain. I’m actually doing a presentation on this subject in one of my science courses after watching the documentary to educate others and bring more light to the disorder…the documentary spoke to me at the perfect time in my life! I can only imagine how difficult life would be living with this disorder or having a child/family member with the disorder, my prayers are with all three families in the documentary.
March 1st, 2006 at 9:33 am
I think that it is really important that when we talk about this medical condition -not beeing able to feel pain- we call it a medical condition and NOT a desease, which is an important distinction for those involved. Not beeing able to feel pain is not a desease in it self, but a condition which unfortunately increases the body’s risk og getting deseases.
March 19th, 2006 at 8:15 pm
Is this related to Riley-Day Syndrome?
March 28th, 2006 at 2:24 pm
i just have seen that film on tv and i wanna wish strength and faith all those parents and their children. That film touched me very much. I hope i will hear and see someday how these children growing and if they had their own family.
March 29th, 2006 at 1:44 am
I love this film!
I’ve learned a lot from this film.
It’s great!
March 29th, 2006 at 8:52 pm
Melody, I know I’m biased but you are such an amazing documentarian. I loved this documentary. I showed it to my class, who all loved it, and i did a critical review on it. Its great. Much love.
April 6th, 2006 at 6:59 pm
I watched the movie today and It was pretty much amazing. I cried during it. It was a excellent documentary. Much love, and give my love to them
April 7th, 2006 at 5:48 pm
I just got done watching the movie.
I am so sad that this has happened to these children. There lives and there families lives are so hard everyday. I have a 23 month old boy and I remeber when he was born I wished I could take all his pain that he would feel in life so he never had to and know I am so gratefull that he does feel pain, I never thought of something like that would happen to babies that couldn’t feel pain.
If you could send me more information on the illness, how it happened and why I really wont to know.
If there is anything I could do to help the families out please let me know also.
April 11th, 2006 at 7:19 pm
I am very interested in this documentary…I just saw the Oprah episode (rerun April 2006) and really want to see it as a whole. Is it scheduled to air anytime soon?
April 19th, 2006 at 5:05 pm
My daughter was diagnosed with Congenital Insensitivity to Pain on April 18, 2006. I have only compassion for parents who have to deal with this type of syndrome, I have been battling with keeping my child safe for the last 2 1/2 years. I wish I could be in contact with someone who could help to aleviate some worries and maybe give some pointers on how to deal with this. Thank you….Heather….mygirls27827@aol.com
May 4th, 2006 at 10:44 pm
Hi!
I saw the document on Finnish TV and it was very touching. I have try to find out the contact information of Gabbys parents without any success. According the document Gabby lost left eye caused by some medicine. My daughter has lost also left eye by medicine prescripted by doctor. I would like to disscus via e-maill with Gabbys parents concerning medicine which was prescripted to Gabby but I do not have Gabbys parents contact information. Does anybody know Gabby’s parents address or e-maill address
aki.naveri@metso.com
May 4th, 2006 at 10:57 pm
My son is three years old and is diagnosed with dyspraxia and sensory integration (processing) disorder. He feels very little pain (although he does feel it after a delay) and only cries when he sees his own blood after an injury. He loves falling and crashing into things (and his little brother - yikes) just to feel the impact. I have not seen your movie yet (I don’t have cable), but look forward to learning about this disorder and how the families have learned to cope with it.
June 9th, 2006 at 8:22 am
Heather, Aki and Marian.
You should enter www.gift-of-pain.com, there you will find all the information you need.
June 16th, 2006 at 11:59 am
Thank you and God Bless you.
July 8th, 2006 at 11:19 am
I just finished watching the documentary on Sat. 7/8/06. I understand so well how careful these children have to be in their daily lives. I am just the opposite of them. I am Hypersensitive to everything. A lite breeze hurts as if I am being slashed with a knife. A touch from someone anywhere on my skin feels like I am being rubbed raw with sand paper. I get massage thearapy 3 times a week to help desensitize me. So I understand the difficulties the children are going through. I am proud of the parents who are dealing with what their children are going through. Some parents are not able to handle children with physical difficulties and give them up for adoption or if they don’t they treat them as if they are not important. The parents on the film are totally devoted to these children and are giving these wonderful children all the love and attention they need and deserve. I just hope they have family and friends that are will to help out and allow the parents to have some time to themselves once in a while. Caregivers need a break now and then. I wish these family all the love and luck in the world. Deal with life one day at a time. Cherish the good and learn from the bad. Thanks for the documentary, I am not alone with my difficulties.
July 8th, 2006 at 12:56 pm
Try this instead:
http://www.gift-of-pain.org/
This film was fabulous. Thank you, Melody.
July 28th, 2006 at 5:09 pm
I have lived with chronic pain for over ten years. This film has changed my perspective on my pain. I admire the girls in this film and hope to be as brave as they are one day. Thank you so very much for this film.
August 1st, 2006 at 8:10 am
I was very interested in the Mermaid syndrome that i saw on Oprah show on Monday July 31st 2006…Wow and the one about life without pain…i cant even imagine…thats gotta be difficult
August 2nd, 2006 at 12:23 am
I just happened to stumble across this movie on the Sundance Channel and I set my vcr to tape it not really knowing much about it. I watched it last week and thought it was brilliant. Those little girls are amazing and inspiring in so many ways. I’ve recommended it to my family and friends and will continue to spread the word. Thanks so much.
August 2nd, 2006 at 8:37 pm
I just saw the Oprah show. My son has Hereditary Sensory Neuuropathy. He will be 27 this month. Gabby’s story sounds just like my son. The broken bones,burns.blindness, etc. At least someone else knows what we have been dealing with for almost 28 years. Thank You ,Jackie J. Zambrano
September 7th, 2006 at 2:34 pm
Will this be broadcasted in the Netherlands? As a medical student I find this very interessting
September 9th, 2006 at 10:58 am
I know about this condition from the Oprah show. I was totally amazed. How come they can’t feel the pain? I thought everyone feel the pain, surely. But now I know, it’s not ‘everyone’ anymore. And it must really be a big challenge for the parents in taking care of them. Salute for them and God Bless you. And, I have a question. Will this be broad casted in Indonesia? I think this is very interesting for me. Thank you…
September 19th, 2006 at 10:22 am
I found out aboput the website through maury. This look like a very interesting film. When will it be out on dvd in stores so i can get it. Will it be played on the medical channels after it is released to dvd. I hope these kids lead a wonderful life.
September 20th, 2006 at 6:25 pm
My daughter has similar problems, but not at all what ya’ll are going through. My 7 year old has an extremly high tolerance to pain also. It’s very disturbing to a parent, I can only imagine your life. I shall pray for ya’ll. Sincerly, Stormie
October 13th, 2006 at 10:31 am
Hello: I was looking at all the comments Dad.
October 20th, 2006 at 9:27 am
I was watching Maury, and 6 year old Gabby is so cute.. Good Luck with everything you guys deserve it.. All of you who made this website
October 20th, 2006 at 10:25 am
i saw that poor little 6 year old girl gabby on maury and i WAS shocked the poor little thing as great as it would e to live without pain THat sucks!
October 20th, 2006 at 12:30 pm
Hi, I just saw Gabby on Maury Povich this afternoon and I just want to say that she IS a complete delight and you must be very proud of her bravery. I live in Milwaukee, WI and would be honored to meet someone like her. May God bless Gabby and her family!
October 20th, 2006 at 12:43 pm
HI. My name is Bethany Jones and I am a 14 year old girl living in Tennessee. I found out about you on the Maury show and I wanted to let you know that I appreciate hoe you are dong things and how strong you are. I do not know what it is like to not feel pain. I really admire your strengh and courage. Thank you for giving hope to all people who are going through the same thing. I am not writing this as a pity note or anything like that i just wanted you to know that I really admire you. God bless.
Cordially Bethany B. Jones
October 20th, 2006 at 9:55 pm
Hi there! I saw beautiful Gabby on Maury today. I was touched at the strength that it must take to endure such a horrible disease. She is, and will grow to be, such a beautiful person, with so many things to teach regular people like you and me. She is an angel. Take care and all the best in your lives.
October 26th, 2006 at 5:32 pm
Is there anyway I can get a copy of the film clip? I am doing a presentation on CIPA and would love to include it. Can you send it to me?
November 4th, 2006 at 7:07 pm
My mother and I were absolutely fascinated by your documentary shown today on the Sundance Channel. You ended the documentary talking about the 30 year old woman in NYC who is the mother of two. Any chance you will be revisiting the subject and tell us her story about pregnancy and labor “without pain”? Great to see the wonderful work of American female documentarians such as yourself.
November 5th, 2006 at 10:45 pm
I am EXTREMELY interested in finding out how to get in touch with Gabby’s family or the doctor that diagnosed her. Any help you could give me would be very welcome.
November 6th, 2006 at 2:38 pm
Jill: For your presentation, you can order A LIFE WITHOUT PAIN on this website. Also, try your local library. If they don’ty have the DVD, they should order one for you (give them this website info).
If you just need clips for your presenation, you could show the trailer that’s on this website.
Erin: thanks for your nice comments. I would love to do a follow up and include the NYC mother and her kids. ABC News is talking to me about doing just that, so they might beat me to it.
I still would like to do a follow up of all the girls either way.
And to address the last comment above: to get in touch with Steve and Trish (Gabby’s parents), youcan go to their website:
http://gift-of-pain.org
Thanks to all of you for posting…and caring. ~Melody
November 13th, 2006 at 1:24 pm
Wow- what a great film! Thanks Melody.
I just saw it on the Sundance channel. Hopefully once Gabby and Miriam get a little older, they will understand more and be able to take care of themselves.
We are moving in a week, and I’m supposed to be packing, but I flipped on the TV at lunch and was frozen! I watched the whole movie with my hand to my heart, I feel so for the children and their parents!
I found another website that said people with HSAN rarely make it past age 25… how sad!
Then at the end of the film, I read the remark about the 30 year old woman that was married and had two children- I burst into tears!
Everyone should see this film- and it deserved awards…
Bravo Melody!
November 19th, 2006 at 5:10 am
Hi, the show just aired on Swedish national television on Saturday and I found myself glued to the screen. It’s heartbreaking that these children have to live with the condition (and scars) that has been inflicted on them. The children’s and their families’ courage to cope with what life has thrown at them is admirable. Shame on us for moaning at every whim.
November 23rd, 2006 at 12:04 pm
Hi, I just watched the show here in Hong Kong and I cried while watching it. I truly hope that these 3 wonderful kids could live the most wonderful life and be always in their “good days”.
Thanks for making this film.
November 23rd, 2006 at 12:47 pm
Melody, i just watch your film “A life with out pain’, on hong kong tvb preal, i will tell my friends, girls touch my heart, i love the parents too, u did great, thank you, the massage remind me, even don’t know what going to happen, never turn self victumize, with love and wistom, i can creat different, may it help both child and family,
December 26th, 2006 at 2:36 pm
Hi my is Josie and I just got done watching your show on montel.
Well I just wanted to say is that God is with you and you will always be in my prayers. Keep growing very strong, stay in school.
December 30th, 2006 at 2:43 am
HEY well i watched ur video at skool m teacher bought it on diz wbsite and i found it really intresting just keep going w ur normal life and god will always be there 4 u and no matter wat people say or do u are as normal as u can be!!!!
January 26th, 2007 at 5:29 am
I am in Germany. I found this homepage today. It is very important for me, to see this film on TV because of the CIPA / HSAN IV of my son (9). Do you know the sending-time in europe, germany? Can you tell me more?
March 17th, 2007 at 9:00 pm
Hi. I have a sister who is, 26 year’s old. And, she has a rare disease called, “RSDS”. It’s a disease where, you experience extreme pain, all the, time. If people want to know more, about my sister’s disease, the website is: www.rsds.org. And, Melody, I liked how you documented these young girl’s, because, people know now, about there, disease. Have you ever thought of doing another documentary, on people with extreme pain, like my, sister? Thank you for your, time.
March 25th, 2007 at 10:30 am
Thanks for the documentary. It opened my eyes to the “blessing of pain”. I serve as chaplain at one of the largest hospitals in the country. And having this important info on pain will be most helpful in ministering to my patients suffering. This would also apply to the absense of emotional pain as well. Pain, at all levels, in a real sense saves us in the life. Thanks again. God be with you.
April 3rd, 2007 at 9:27 am
aaaaa i want help them… i think for the first time that feel pain is not bad thing….
April 12th, 2007 at 8:50 am
I have it to. I’m really happy to know that I’m not one of the only people who can’t feel pain. Except that I can’t feel pain only from my waist to my neck. Arms included.
April 30th, 2007 at 12:22 pm
I watched the oprah special and now I am sharing Gabby’s story with my high school biology class, since we are talking about the nervous system. The students are in awe and really feel sorry for Gabby and her family.
June 9th, 2007 at 10:47 am
hi.i would like to know where could i land uup wid the dvd of this movie.coz i ahve my child who is diagnosed with this order.and i guess this dvd will be of great help to me.i am a resident of India.so if u cld help me out i would be highly obliged.
August 9th, 2007 at 9:00 pm
hi. i am from North Korea.
i am finding information about analgesia for my project..
l didn’t know how painful this order is.
i am very sorry to all those people who are diagnosed with this order..
September 26th, 2007 at 9:01 pm
oh my… i can’t even put into words what seeing these photos and hearing these stories has done for me in my own personal views on life. keep up the great work–you guys are truely amazing! i have much much love for you and your families. blessed are those who have met these very special people. and blessed they are to have such caring, loving, understanding people in their lives. please continue to help protect them. love always, ria
November 7th, 2007 at 2:40 am
Incredible….. I have no other words to describe how I feel about this film. I was so deeply touched by the families and the girls that have this condition. The parents are incredible people along with the siblings. Just incredible. God Bless you for making this film.
Sincerely,
Mandy