Hi Frank, I'm not sure if you will ever see this message. However, I am so thankful to have found it. My granddaughter was born 2 months ago with prune belly. I can not tell you how many tears I have cried wondering if she was going to make it. Your story has given me hope. I know God is healing her. You have given me hope for her future. Thank you for sharing your story.
Good morning Dee! I just saw this message & thank you SO much for writing to me! I hope your granddaughter is OK & please feel free to contact me anytime with any questions! My website is www.FrankWalkerMusicLINY.com & all my contact info is on there. Also please visit www.PruneBelly.org to hear from other families!
Thank you so much for this video! I appreciate your story so much. My nephew is 5 years old and has PBS. I love the little guy so much! 🤗❤ He is becoming more and more aware of himself being "different" as he says, and says he wants his stomach to be more like ours, it breaks my heart. I remind him everyday that he is strong and although life may pose more challenges for him to not be any less confident. One of my biggest fears is someone bullying my nephew and kicking him. He has not had any surgeries since infancy. His parents are idiots. I know he should have progressed by now, I want to take over his medical care. I'm trying to get custody of him so that he has a better chance at life, simply a more comfortable life filled with more independence. He currently has to be wrapped at least twice a day to collect his urine and I pray that is not his future. Your abdominal wall at 95% brings me some hope for my nephew, we are so careful with him and I want us to be able to let go more as he gets older. Anyhoo, thank you for giving me some insight and some hope!
Thank you, your story gives me hope for my son. He's 16 months old. In Australia it's extremely rare. The doctors that are treating him say they only read about it in text books. I got told to prepare a coffin as they didn't expect him to live long. He surprised everyone. With intensive therapy he's crawling and sitting. I have the same worries and fear of him getting hurt and passing away prematurely. You are amazingly strong and so are all the PBS survivors. Bless you, and to all the families suffering with this, you're in my prayers and love you all 🙏😇
Hi Michael! Thanks so much for your comments & apologies for the delay! the surgeon in Dallas TX is Dr. Jeffrey Fearon. www.thecraniofacialcenter.org/meet_dr_fearon.html
This story really shows how lucky I am, I was born with prune belly syndrome but I had a great doctor from birth and he was able to treat the more serious parts of my condition by the time I was 4 I had the same muscle surgery when I was 3 or 4 and I can’t really remember life before it but I’m so glad I had it because now I’m mostly fine. even then it was still pretty bad but as I got older my condition improved one of the best moments in my life was when I did my first sit-up without assistance I believe I was 10 when that happened. But I do relate to many of your experiences I was bullied for it a lot and I remember kids saying that I was pregnant when I was in second grade and in 7th grade someone kicked me in the stomach and I’ve had to do catheters for most of my life but it seems like I made it through the worst of it I’m now 14 and doing great my doctor says that my condition has improved greatly and now I’m able to do most of the things that others can do. My doctor saved my life and I couldn’t be more thankful but unfortunately he retired recently.
Hi Robby! No problems with my legs. I built up the muscles before & after the surgery by bike riding! I was 15 at the time so I’m not sure about insurance
Your an inspiration. My 5 yr. old son has pbs. He's had about 4 surgeries. & he used to get a lot uti's. Once he did the last surgery. He almost 1 1/2 with no uti's. But up until recently he's starting to get them again. I will look at the website. We live in Dallas. Can you write out that Dr.s name please. & thank you for sharing your story.
Hey Frank, Can you please send me a message with the name of the surgeon you refer to who has helped with muscle transposition working in Dallas? Thanks!
![โรงเรียนดัดสันดาน นักเรียนเถื่อน..!! [โรงเรียนไดเม่]](http://i.ytimg.com/vi/vRKPeXn4Fl4/mqdefault.jpg)
Hi Frank, I'm not sure if you will ever see this message. However, I am so thankful to have found it. My granddaughter was born 2 months ago with prune belly. I can not tell you how many tears I have cried wondering if she was going to make it. Your story has given me hope. I know God is healing her. You have given me hope for her future. Thank you for sharing your story.
Good morning Dee! I just saw this message & thank you SO much for writing to me! I hope your granddaughter is OK & please feel free to contact me anytime with any questions! My website is www.FrankWalkerMusicLINY.com & all my contact info is on there. Also please visit www.PruneBelly.org to hear from other families!
Thank you so much for this video! I appreciate your story so much. My nephew is 5 years old and has PBS. I love the little guy so much! 🤗❤ He is becoming more and more aware of himself being "different" as he says, and says he wants his stomach to be more like ours, it breaks my heart. I remind him everyday that he is strong and although life may pose more challenges for him to not be any less confident. One of my biggest fears is someone bullying my nephew and kicking him. He has not had any surgeries since infancy. His parents are idiots. I know he should have progressed by now, I want to take over his medical care. I'm trying to get custody of him so that he has a better chance at life, simply a more comfortable life filled with more independence. He currently has to be wrapped at least twice a day to collect his urine and I pray that is not his future. Your abdominal wall at 95% brings me some hope for my nephew, we are so careful with him and I want us to be able to let go more as he gets older. Anyhoo, thank you for giving me some insight and some hope!
Thank you, your story gives me hope for my son. He's 16 months old. In Australia it's extremely rare. The doctors that are treating him say they only read about it in text books. I got told to prepare a coffin as they didn't expect him to live long. He surprised everyone. With intensive therapy he's crawling and sitting. I have the same worries and fear of him getting hurt and passing away prematurely. You are amazingly strong and so are all the PBS survivors. Bless you, and to all the families suffering with this, you're in my prayers and love you all 🙏😇
Hi Alek, thanks very much! Praying he continues to stay healthy!
Hi Michael! Thanks so much for your comments & apologies for the delay! the surgeon in Dallas TX is Dr. Jeffrey Fearon. www.thecraniofacialcenter.org/meet_dr_fearon.html
This story really shows how lucky I am, I was born with prune belly syndrome but I had a great doctor from birth and he was able to treat the more serious parts of my condition by the time I was 4 I had the same muscle surgery when I was 3 or 4 and I can’t really remember life before it but I’m so glad I had it because now I’m mostly fine. even then it was still pretty bad but as I got older my condition improved one of the best moments in my life was when I did my first sit-up without assistance I believe I was 10 when that happened. But I do relate to many of your experiences I was bullied for it a lot and I remember kids saying that I was pregnant when I was in second grade and in 7th grade someone kicked me in the stomach and I’ve had to do catheters for most of my life but it seems like I made it through the worst of it I’m now 14 and doing great my doctor says that my condition has improved greatly and now I’m able to do most of the things that others can do. My doctor saved my life and I couldn’t be more thankful but unfortunately he retired recently.
How did u get abdominal muscles im 30 and i have PBS and i havent had any abdominal wall reconstruction
Have you had any trouble with your legs due to them taking out your quad. Also was it covered by your insurance? Or is it considered cosmetic?
Hi Robby! No problems with my legs. I built up the muscles before & after the surgery by bike riding! I was 15 at the time so I’m not sure about insurance
Your an inspiration. My 5 yr. old son has pbs. He's had about 4 surgeries. & he used to get a lot uti's. Once he did the last surgery. He almost 1 1/2 with no uti's. But up until recently he's starting to get them again. I will look at the website. We live in Dallas. Can you write out that Dr.s name please. & thank you for sharing your story.
Hey Frank Walker I've got Prune belly syndrome to I go to the gym
Joanne Morson Hi Joanne! Please Email me at spoonwalkcd@msn.com !
Ok I message you tonight
Hey Frank,
Can you please send me a message with the name of the surgeon you refer to who has helped with muscle transposition working in Dallas? Thanks!
Hi Dan, that’s Jeffrey Fearon!