A lifelong resident of Long Island, New York, I was born 5/23/67 with prune belly syndrome, including a complete lack of abdominal wall. Other complications & necessary surgeries ensued during early childhood, mostly relating to kidney & other urological issues. Diagnosis was very grim at birth & throughout early childhood and according to some medical professionals, I was not expected to survive. I suffered from pneumonia four times within the first 4 years of life, with one time being nearly fatal.
I honestly don’t remember a lot of my hospital stays (some I do, the earliest being in an oxygen tent at age 6) but I do know that there were several of them. I was told my first Christmas was spent in NY Hospital in NYC, now NYU Hospital, but luckily I kept beating the odds.
What I remember more than anything else was the social side, growing up having PBS. I always had to be protected, wearing a very uncomfortable velcro binder around my waist to keep my stomach protected, especially in school where most kids couldn’t understand what was happening. Most kids were sympathetic, while some weren’t.
I wasn’t allowed to participate in anything physical due to my limitations, so during Phys Ed classes, I would sit against the wall watching my friends participate in activities. I was jealous of them being able to do that…THEY were jealous of me for getting special attention. Looking back on it as an adult, I see that it is not a big issue, but at that point in my life, wanting just to be “one of the gang,” it was devastating!
In 1976, I started to develop some musical skills in elementary school (where I took violin & choir lessons; wind instruments were not an option due to breathing issues caused by PBS) & in a local church folk group (starting out as singer, then graduating to tambourine player and eventually to guitar & piano).
In 1979, during 7th grade, I was walking with a friend of mine through a crowded hallway between classes at my junior high school. I was always very cautious walking through crowds & it was probably visibly obvious to anyone noticing, but it was necessary. I was talking to my friend, looking to my right at him, when I felt a very hard blow to my stomach. Someone (never found out who) just randomly punched me. I went down, unable to breathe at all, was rushed to the school nurse & sent home. I went to my pediatrician for x-rays & saw that my left mid-section was bruised. My doctor told me that if the punch would have been directly centered, I’d be dead. Around the same time, I also had severe scoliosis (caused by PBS) & had to wear a brace from my neck to my hips almost throughout all of 8th grade. The brace was a very uncomfortable apparatus to wear & made sitting in typical little wooden desks impossible, due to a large metallic beam in the front holding all the pieces together.
In 1981, I started playing music in school talent shows & the like and gradually found a niche where I’d feel “accepted” among my peers.
In 1982, my doctors found a surgeon at Nassau Hospital (now Winthrop Hospital) in Mineola, NY named Dr. Ralph Ger, who specialized in (among other things) breakthrough surgical methods such as muscle transpositions for ulcer patients & accident victims. He was somewhat familiar with PBS. We meet, he takes several pictures of my stomach area & after several visits, he is convinced that he can perform abdominal surgery on me. He had me do a lot of bicycle riding & walking to build up 1 of 4 thigh muscles (quadriceps) from each leg that I wouldn’t miss—he would graft those muscles into the stomach area to act as a 95% replacement for the missing abdominals. His surgical assistant was a gentleman named Elliot Duboys.
The surgery (performed on 8/18/82) was a success & Dr. Ger took several more pictures just after the surgery. Ever since, I have really not felt any of the effects of PBS that I did prior to the surgery. I try to live a very happy life as a musician with lots of amazing, loving, & supportive people around me & I hope I do the same for them.
In 1998, Dr. Ger & I met up again. At that point he was Chief Surgeon at Nassau University Medical Center in East Meadow, NY. He asked me to meet him at the hospital to do a series of follow-up tests. He had me do x-rays, sit-ups, leg-lifts, the works, & took new pictures. He was beside himself at how well I was doing & he had to actually remind me that I was incapable of doing all the things he asked me to do for these tests prior to the surgery… I had forgotten! He even x-rayed my back to see how the scoliosis was. I brought in an x-ray from 1982 (after wearing the brace for the year) to compare the two & they were IDENTICAL!!!
Dr. Ger then took all the information & pictures he had gathered on me since 1982 and wrote an article about the surgery for the medical journal Clinical Anatomy.
For over 23 years, my surgery was the only corrective muscular transposition done for PBS purposes. Then in February 2006, my story inspired corrective surgery performed on Marc Younger in Montreal, Canada.
In November 2006, the PBSN became aware of a family in Dallas, Texas, whose 7-year-old son had an operation nearly identical to mine, but at 18 months old, whereas I was 15 years old! The surgeon is Dr. Jeffrey Fearon. My doctors were uncertain if the surgery could be performed at an age much younger than my own due to questions concerning growth of transposed muscle, although Dr. Ger had found that it worked on young dogs!!! Dr. Fearon used Dr. Ger’s article on my surgery & expanded on the idea, feeling that it should work no matter what the age of the patient. He was successful & has since performed several other muscle transposition surgeries in Dallas on young PBS patients!!!
The surgery has literally changed my life & I highly recommend anyone capable of having it done to look into it. My uncertain days of daily up & down life with prune belly syndrome are thankfully behind me. Through this surgery, my abdominal wall was 95% corrected when I was 15.
I turned 40 on 5/23/07 & used the opportunity to raise awareness for PBS. I have the amazing/lucky/blessed opportunity/ability to “look back” at what my life used to be & for the longest time, I took advantage of it & practically forgot about it… until I found the PBSN & its members.
When I found this website in 1997, I contacted Brian Beirne (the PBS website’s originator who has since passed on). I gave him all this information & he was beside himself upon hearing it. I even asked him why PBS is not commonly heard of by the general public like Parkinson’s disease. He said because PBS doesn’t have a celebrity like Michael J. Fox to come out & say “I have this.” Only then will media & the like be willing to learn about it.
This website reminded me of my “previous life” & showed me that people still deal with PBS just as much as & in many cases more so than I did back then. I hope that my personal PBS outcome can help other people’s outcomes as well & am here to help make that happen however I can. I want every PBS child & adult to have AT LEAST the same opportunities/experiences that I’ve had! The surgeons who spoke about abdominal reconstruction/transposition at the PBSN’s 2005 Boston convention were MY doctors. Dr. Ger is now retired but tours the world giving lectures on his work. Dr. Duboys is still in practice on Long Island, New York. They were extremely generous & willing to help and still are, as am I with the limited background/knowledge I have!
The community voted me in as VP of the PBSN in 2004 & it was with great honor that I held that title. I do all I can to help raise awareness (medical/media/etc.) for this condition & website, mostly through what I know musically, as well as working with other PBSN members on what THEY do best & combining our strengths together to achieve every goal.
I’ve written & recorded a song about prune belly, hold musical fundraisers for it, & try like crazy to gain interest throughout the general AND medical communities by doing so. My hope is that I can take & use my musical background to capture people’s attention, then hope they’ll only become more interested once they look into it & learn about it in depth.
With help from many generous & amazing friends, we have been able to raise well over $30,000 since 2002 & I am always eager to seek other ways to fundraise. I ask the ENTIRE community to PLEASE take any musical offerings, like the Not The Only One CD, & spread the word about them & SEND copies to radio & TV stations all over the world & request airplay. And please write to CD Baby & review the song for the public!
I have personally written to the likes of Oprah Winfrey, Montel Williams, etc, & so far I only get form letters back. But with ENOUGH of us writing them & others, SOMEONE has to finally listen & respond! In 2002, I wrote to the Muscular Distrophy Association, which Jerry Lewis famously hosts his annual telethons for, & asked them to consider including PBS as one of the over 40 muscular conditions they cover & research. After some brief research, they politely declined, saying it is not the same KIND of muscular conditions they work with. But I can’t help wondering, if we had enough public support behind us, would they reconsider at some point? They usually break their own fundraising records EACH year & are usually in the SIXTY MILLION dollar range! ANY portion of that would greatly help us!
My home email address is firstname.lastname@example.org.
Please feel free to write me about any of these topics & I’ll do my best to reply ASAP.
Thanks very much–
Frank Walker has 2 CD’s available:
–EVERY US by SpoonWalk (with Ramona Spooney) can be purchased at
–NOT THE ONLY ONE by SpoonWalk with Jen Chapin (charity single for the PBSN) can be purchased at http://www.cdbaby.com/cd/pbsn