Oprah Winfrey Re: Clubfoot/Ponseti method press kit

[Guest guest]

,

I don't see how that could hurt anything. I also have sent e-mails

to Oprah in the past, but it's been a long time. I sent Dr. Ponseti

in as being nominated for the Angel network back when she was doing

that.

Pam and (8-12-01)

> Here is a copy of some of the things sent to Oprah in early 2000.

I

> believe that about 15 parents sent their stories together.

>

> __________________________________________________

>

> from February 12, 2000

> Dear Recipients of Ponseti miracles,

>

> Lori and I (Allyson Egbert) have been working on a project recently

> that we'd like to solicit anyone's help who would be interested.

> Since the onset of this momentum last year, we've felt that

> eventually there would be enough support to be able to approach the

> national TV networks in hopes that they would televise a national

> program on Ponseti. There have been attempts by the U of I to get

> articles in well-read newspapers and magazines, but we feel that as

> parents we can be doing a lot more. Time is of the essence for

> children!

>

> Both of us have written rough drafts to be sent to Oprah. Our view

> is that her show would be a good place to start, since her

> philosophies of life include:

>

> 1. She believes in faith or fate, as some would word it.

> 2. She has expressed her opposition to unnecessary surgeries

> (her views on hysterectomies are all-telling)

> 3. She views parenting as the hardest and most important

> calling in life

> 4. She believes in miracles

> 5. She has a deep concern for the well-being of children

>

> Of course, nothing we feel should ever be done without Dr.

Ponseti's

> approval. The day before he left asked his permission and

he

> said, " Go for it " .

>

> Where do we go from here? All of us have slightly different

> miracles to be shared. If we could all spend a moment to type

> up " our story " with Oprah's show in mind, we'll then collect each

> other stories and send the show numerous " Ponseti packages " by mail

> and e-mail.

>

> One more thing to consider. If Oprah can see that her show could

be

> a major catalyst in bringing info to those without internet access,

> and become part of the miracle herself, she may be more interested

> in doing a story. Enclosed is my first draft, which if you read,

> may help you understand this ripple effect of miracles as I've

> described. Or, you may want to write yours first so that mine

> doesn't influence yours. That way we'll get variety.

>

> Please let me know if you'd like to take part in this endeavor. My

> hope is to be able to show Dr. Ponseti our " Ponseti package " when

he

> returns from Europe, after March 17, to quickly be sent to Oprah.

>

> Thanks Everyone,

>

> Allyson Egbert

>

> ________________________________________

>

> March 17, 2000

> Dear Oprah,

>

> We've always believed in miracles, but never has this become so

> vivid to us as it has in the last year.

>

> On March 17, 1999, St. 's Day, we rejoiced in the blessed

> arrival of our 6th child and 3rd son, . Having brought

others

> into the world before, we entered the delivery room anticipating

the

> joy we would feel to once again place a perfect little child in our

> arms. Nothing could have prepared us enough for the events about

to

> unfold.

>

> came into the world screaming as loud as the rest of our

> children, but the instant he was delivered and the doctor raised

him

> in the air, our eyes focused on his feet—turned in, gnarled and

> twisted. Suddenly once happy noises of the delivery room

> disappeared into oblivion as the realization that our " perfect "

> little child had been sent to us with a deformity. Our kind doctor

> and nurses tried to ease our shock with optimistic words. They

told

> us that things could be much worse, but when our delivery time was

> complete and they left us for other deliveries, the reality of what

> had just transpired and the unknown of the future left us in

> despair. The diagnosis—Congenital Clubfoot.

>

> The next 24 hours we didn't sleep, trying to gather as much

> information on this condition as we could. We found that this

> condition was treatable, but was told by our Pediatric Orthopedic

> Surgeon that our son's condition, moderately severe, had a 90%

> chance of needing surgery at 6 months. Then, would be

> watched for relapses in his growing years, possibly resulting in

> further corrective surgery. Surgery? On a baby's feet? Without

> any guarantee that there wouldn't be multiple surgeries? What

about

> risks? What about complications? What about lifelong scarring and

> possible arthritis? What about complications from the surgery that

> might not appear until adulthood? These words stung.

>

> This is where you, Oprah, came into the picture.

>

> We took home from the hospital the next day, March 18.

> Exhausted from 2 nights with little sleep, we collapsed on the

bed.

> Aimlessly, we picked up the remote control and turned on the TV,

> trying to distract our minds and bodies from the worries we faced.

> Your show was on the air. The topic—Miracles. There was only ten

> minutes left in the hour, but what we saw sent chills down our

> spines. The story was about a baby boy born with clubfeet whose

> mother was told he might never walk. This courageous mother,

> with undoubting faith massaged her son's feet up to eight hours a

> day. One day, he miraculously stood up and not only walked, but

> ran, growing up to be a star athlete (We're sure you don't need US

> to tell YOU the story). My sister called—Did you see it? My

friend

> called—Did you see it? Needless to say, your story renewed us with

> faith and hope. We kept feeling, there must be a better way.

>

> Our son's feet began to be cast once a week, while day and night we

> searched for other methods of clubfoot treatment. One and a half

> months prior to 's birth we had purchased a computer and had

> just logged on to the Internet. Two weeks after he was born, after

> having talked to numberless doctors across the country, who all

> concurred that surgery was the prevailing method of treatment, we

> came across a web site from the Virtual Hospital at the University

> of Iowa. What we read was shocking. Dr. Ignacio Ponseti, emeritus

> professor of orthopeadic surgery, now a young 86 years old had

> devised a treatment for clubfeet that had a 50 year documented

> history. His manipulation and casting technique had resulted in

> only a 5% chance of a need for surgery. He claimed, " When compared

> to other techniques for correction of the deformity, our

> manipulation, casting and splinting procedure has never resulted in

> any disability for the patients. " For 50 years? It was hard to

> believe, yet desperate in our search for an alternative non-surgery

> method we flew to Iowa City (which to us was in the middle of

> nowhere) to meet Dr. Ponseti ourselves.

>

> The first day we saw him we were very impressed by his humble,

> unassuming gentle nature. Upon examination of our son he said he

> could fix them in 2-3 casts including a simple 5-10 minute heel

cord

> tenotomy with no invasive surgery! We wore him out with our

> questions and skepticism that he could do what he claimed. (The

> details and specifics of his technique are enclosed.) We couldn't

> figure out why not more of the 500-600 pediatric orthopedic

surgeons

> in the country had not adopted this technique, if what he was

saying

> was true. At the time there were approximately 15! To make a long

> story short, we decided to give it a try. We figured that if he

> couldn't perform a miracle with our son, then we could still have

> the surgery as planned.

>

> We left Iowa with our first set of casts and returned the next week

> with anticipation. The casts were removed and we couldn't believe

> our eyes. His feet looked almost perfectly normal! He was

recasted

> and we began our journey home, crying our eyes out in the car on

the

> way to the airport full of gratitude for the miracle that had been

> bestowed upon our son.

>

> The following week we returned, the tenotomy was performed, and he

> was cast for his final time. Essentially in three visits to Dr.

> Ponseti, our son's deformity was repositioned to a normal position,

> never having to face ankle ligament and joint surgery or have the

> risk of future complications from this surgery. Upon our return to

> our home we took to our original surgeon who was quite

> interested in our journeys to Iowa. He looked at his feet and

> said, " I would hope to achieve this result with surgery. I feel

you

> have made the right decision for your son. "

>

> Since then, we have felt compelled to share this non-surgical

option

> with other parents, but have been disappointed to find that only 2-

> 3% of current pediatric orthopedic surgeons totally understand and

> use this " Ponseti Clubfoot Method " . As a result, parents who do

not

> have access to the Internet and believe that surgery is the only

way

> are not aware of this miraculous technique. Dr. Ponseti himself

has

> come out of retirement giving up his personal time with the goal to

> reeducate current doctors who perform surgery so unnecessarily.

Yet

> unfortunately, there still appears to be approximately 4,000+

> operations a year performed on children with clubfeet in the U.S.

I

> guess doctors are creatures of habit. ( World-wide there are

> approximately 130,000-150,000 children born with clubfeet

annually. )

>

> Four months after was born, and one month after this miracle

> was performed, on July 22, we happened to turn on the TV in the

> middle of the day, surprised to find that your same show on

Miracles

> was being rebroadcast. Our hearts burned, as a reminder that we

had

> been led to a better way for our son. We realized humbly that

> without Dr. Ponseti, we would shortly be heading into surgery, with

> no reassurance that the surgery would be totally successful.

>

> Thank you, Oprah, for giving us hope.

>

> As a result, we have joined forces with other parents whom we have

> met through the internet whom have also been the recipients of Dr.

> Ponseti's miracle, in trying to convey this message of miracles. *

> (Some of their miracle stories are attached.) We hope that we can

> continue this ripple of miracles by being effective in sharing this

> message. It's our hope that Dr. Ponseti's life-long dream for " the

> sake of all children of the world " to live happy, pain-free lives

> will be realized.

>

> This month we celebrate 's one-year birthday. I don't think

> we'll ever look at St. 's Day again as a time to merely

> celebrate " luck " anymore.

>

> Sincerely,

>

> , Allyson and Egbert

> 1270 Imperia Drive

> , Nevada 89052

>

> martinegbert@e...

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