Date of Birth-5/23/67 (lifelong resident of Long Island, New York), born with Prune Belly Syndrome, with 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 & according to some medical professionals, I was not expected to survive. I suffered from pneumonia four times within the first four 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 that my first Christmas was spent in NY Hospital in NYC, now NYU Hospital. Luckily I kept beating the odds every time.
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 though elementary school (where I took violin & choir lessons; wind instruments were not an option due to breathing issues caused by PBS) & a local church folk group (starting out as singer, then graduating to tambourine player & eventually to guitar & piano).
In 1979 during 7th grade, I was walking with a friend of mine through a crowded hallway in 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 feel 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 & gradually found a niche where I'd feel "accepted" among my peers.
In 1982, my doctors find a surgeon at Nassau Hospital in Mineola NY (now called Winthrop Hospital) named Dr. Ralph Ger, who specialized in (among other things) breakthrough surgical methods such as muscle transplants 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 transplant surgery on me, so 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 & he 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 (at no cost to me!). He had me do X-rays, sit-ups, leg-lifts, new pictures, the works & he was beside himself at how well I was doing & had to actually remind me that I was incapable of doing all of the things he had me do for these tests prior to the surgery...I had forgotten! He even X-ray'd 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 & wrote an article in 1998 about the surgery for a medical journal called Clinical Anatomy, which can be found on this page, as well as a 2009 follow-up article by Dr. Duboys. The first of several videos from 2009 of Frank & Dr. Ger discussing the surgery can be found here: http://www.youtube.com/watch? v=dvfbBspdJSY&feature=youtube_ gdata_player
For over 23 years, we were under the impression that my surgery was the only CORRECTIVE muscular transplant done for PBS purposes.
In February 2006, my surgery inspired this one……performed on Marc Younger in Canada:
http://www.prunebelly.org/ Vanquishing%20Prune%20Belly %20Syndrome.pdf
In November 2006, the PBSN became aware of a family in Dallas, Texas, whose 7 year old son had identical surgery to mine sometime in 2000, but at 18 months old, where I was 15 years old! The surgeon is Dr. Jeffrey Fearon: http://www. thecraniofacialcenter.org/ meet_dr_fearon.html
My doctors were uncertain if the surgery could be performed at an age much younger than my own due to questions concerning growth of transplanted muscle, although Dr. Ger had found that it worked on young dogs!!! Dr. Fearon was aware of 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 performed 23 others (as of 2017) mostly on young PBS patients, all with a 100% success rate!!!
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 PBS was 95% “cured” when I was 15.
Anytime I can, I try to find opportunities 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 within it.
When I first visited http://www.prunebelly.org 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 known throughout the general public as something like Parkinson's Disease. He said because PBS doesn't have a Michael J. Fox-type of celebrity 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 most cases more so than, I did back then. I hope that my personal PBS outcome can help become 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/transplantation at the PBSN's 2005 Boston medical convention were MY doctors.
Dr. Ger eventually retired & toured the world giving lectures on his work. He passed away in April 2012 at age 91.
Dr. Duboys is still in practice on Long Island, New York, with info found here: http://www.associatedplasticsurgeons.com
Both were extremely generous & willing to help, as am I with the limited background/knowledge I have!
As of 2017, has learned that only 1500 people are currently living with Prune Belly Syndrome in the United States.
The worldwide number is probably not that much higher & only 23 people within these numbers are female!
The numbers are much lower than originally thought & are extremely alarming!
I was elected Vice President of the PBSN from 2004-2008 & it was with great honor that I held this title. I hope I lived up to its significance. The strongest role I played as a PBSN Board Member was to do all I could to help raise awareness (medical/media/etc) for this condition & website, mostly through what I know musically, as well as work with the fellow board members on what THEY do best & combine our strengths together to achieve every goal. The current board members have taken us far beyond this to amazing places & circumstances!
I've written & recorded 2 songs about it ( https://www.youtube.com/watch?v=9_09FQgnUEI&list=UUPBjI_ptRowac7IL85NT4Mg ), 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 manage to raise well over $100,000 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 & Party Marty's children's CD, & spread the word about them & SEND copies to radio & TV stations all over the world & request airplay. And please write to http://www.cdbaby.com/cd/pbsn & 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 hosted 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 wonder that if we had enough public notoriety 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 E-mail 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.
Frank Walker has 2 CD's available:
-EVERY US by SpoonWalk (with Ramona Spooney) can be purchased at http://www.cdbaby.com/spoonwalk
-NOT THE ONLY ONE by SpoonWalk with Jen Chapin (charity single for the PBSN) can be purchased at http://www.cdbaby.com/cd/pbsn
Both CD's are also downloadable through iTunes. Other musical info can be found here:
Dr. Ralph Ger discusses his surgical work in 2009:
Random PBSN photos with 2 songs I wrote for them:
2012 College Radio Interview for the PBSN, with Mark Klein, Joanne Amante & PBSN VP Debi Apgar:
2015 interview with Lora Cusumano, Debi Apgar & Tammy Pendergast:
Random PBS You Tube videos:
1999 Article on my surgery by Dr. Ralph Ger & Dr. Elizabeth Coryllos
2009 Follow Up Article by Dr. Elliot Duboys
My brother Tony Walker's website: