Christine Honeycutt

My daughter Christine was diagnosed with Parry Romberg Syndrome (PRS) and it’s variant Linear Scleroderma (en coupe de sarbe) in March of 2008 when she was 8 years old, now 12 her life and ours have changed greatly. Her father and I were not given much hope for her treatment. After hundreds of hours researching we decided to contact Dr. Siebert to discuss the possibility of Christine having the micro vascular tissue transfer in hopes to stop the progression of PRS.

After Christine’s three surgeries, I can honestly say that Dr. Siebert was an answer to our prayers. I trust him with my child’s life. He and his staff are the best! They have become just like family to us and we look forward to seeing them and visiting with them every time we make the trip to Wisconsin. Dr. Siebert has set the bar so high for other doctors, especially in Christine’s eyes. I can’t see any other doctor reaching his level of excellence, he’s got the whole package…his knowledge, dedication, confidence, skills, experience, follow up care, since of humor, easy mannered personality, oh and his bed side manner is incredible. All this is why we think he is the greatest! The Dr. Welby of our times.

His follow up care is unbelievable; he is always available to us via phone or e-mail. After Christine’s second surgery she had a complication almost three weeks after the surgery (no fault to the procedure,…just a freak incident) The doctor never left our side so to speak…he was on the phone with the ER doctors as soon as we arrived in the emergency room here in NC, he was completely in charge of the 8 hour ordeal. He was on the phone from 7pm to 3am with a team of doctors in two different hospitals. Christine’s dad and I were especially thankful for him during this event because it was so comforting just knowing that Dr. Siebert was making Christine’s medical decisions.

It’s very hard to articulate the feelings of gratitude we have for Dr. Siebert, he has given our family hope, and he saved our little girls face from further destruction, pain and all that comes with that. Now our daughter has a chance to have a normal pain free life with a future of endless possibilities.

I am forever grateful to Dr. Siebert and his family for the dedication and sacrifices they all had to make in order for their husband and father to be the great surgeon he is.

Christine’s Mom Vicki



Surgery #1
Christine with her buddy LuAnn

Surgery # 2
Christine with Dr. DaBombdiggety

Hank

Getting the diagnosis of Parry Romberg Syndrome was devastating to us. The doctors didn't know much about it and the only treatment option we were given for our then seven year old son was a form of chemotherapy and intravenous steroids. We weren't comfortable with this and started to research other options. Everywhere I looked, I seemed to hit a brick wall...After 2 1/2 months of constant searching, I was directed towards Dr. John Siebert, a doctor who performs an "intervention surgery" on PRS patients. I sent the doctor an email and was so shocked when he called me on my cell phone, just a couple of days later! It's rare to have a doctor actually call you!

The minute I heard his reassuring voice, I knew things would be different. We flew across the country to see him for a consultation. He took one look at our son, Hank, and said, "I can help you." My husband and I let out a huge exhale of air...I think we had been holding a breath since Hank's diagnosis! Hank had a "micro-vascular free flap tissue transfer" right after his 8th birthday, just four months after meeting Dr. Siebert.

The care Dr. Siebert gave our young son was amazing! From pre-op, to surgery to the after-care, Dr. Siebert was there. He even followed up with us after we got home. At one point we thought Hank had an infection and sent a panicked message to Dr. Siebert. He called right away...it was late...at least midnight where he was. He had just finished with a surgery and was still at the hospital. He waited there while I took photos of Hank and then emailed them to him. He then called a prescription in to the 24 hour pharmacy that we use. Who does that? Dr. Siebert goes above and beyond. (as it turns out, Hank did not have an infection and was just fine)

We can't say enough good things about Dr. Siebert. We admire him so much and love him for what he has done for so many people! Thanks to Dr. Siebert, Hank is enjoying a "normal" life...getting straight A's, playing in the school band, playing baseball...doing all the things a healthy 11 year-old should be doing. A few years ago, we didn't know if this would be possible! Hank has had 2 revision surgeries and each time the outcome is amazing. It's been two years since Hank's last surgery and as we get ready to head to Madison to see Dr. Siebert, we are so excited! Surgery is no fun...but seeing Dr. Siebert makes it all OK.

Dr. Siebert is our hero...he's one of the good guys...we consider him family!

God Bless,
Terri
Hank's Mom

Kelley Sperry


"It's best to wait until this disease does it's damage to her face, and then we'll try to fix it later". Really?


Kelley had "differences" as a baby. Patches of grey hair, a white spot on her neck, missing eyelashes on her right lower lid, and a funny little twisted nose. We didn't notice that all of this was on her right side. Later, these idiosyncrasies would be tied together in these ugly words: Parry Romberg Syndrome. After scores of appointments and visits to "specialists", a geneticist at Children's Hospital in Denver gave us the news.

At 9 years old, her disease quickly accelerated, and the little things became big things. Headaches plagued her every day, along with cruel teasing and comments from classmates, and rude lingering stares from strangers. Half of her face was becoming distorted, sunken, discolored. Our once bubbly, outgoing daughter was becoming introverted and depressed. Our hearts were breaking for her...as we felt helpless.

Scores of doctors, who had obviously accessed the same scarce information on the internet that we had, were of little help. "Wait until her face is fully grown, and this disease 'burns out', and then consider surgery to repair the damage". Wait....wait...wait...

We stumbled onto a small on-line support group called The Romberg Connection. It was there that we learned about Dr. Siebert. According to some members, he was the "go-to guy" for early intervention. And so we did. Dr. Siebert's plan was to re-establish a blood flow to half of her face, feed in some of Kell's own healthy tissue, and STOP more atrophy from occurring This spelled HOPE. After one 9 hour surgery, and several follow up procedures, Kelley had a much more symmetrical look and felt much better about herself.

Since then, we too continue to share our story with others, hoping that more people might find their way to Madison, WI. Dr. Seibert is a skilled surgeon, and a wonderful caring man, who understands and has helped hundreds of people with Parry Romberg Syndrome. We will be forever grateful to him for making a difference in our daughter's life.

Donna Sperry (Kellbell's mom)

Kelley and Dr. Siebert after surgery



Kristi

I had received info on Dr. S through the Romberg-Connection website. I started doing a great deal of checking into what other options I had for surgery locally. I live in the Sacramento, CA area and it is quite a jaunt to see Dr. S in Madison, WI. After months and months, I realized, I didn't have really ANY options available to me locally. Most doctors that I have seen for my Parry Rombergs have known less about the disease than I did. Very disheartening to say the least.

However, in March, 2010 I finally made the decision (one that was not made lightly), to see Dr. S, and made the treck to see him (and LuAnn - don't forget Lu!!!!), I have never been happier of a decision in my life.

From the moment I met him, he and his staff made me feel comfortable and glad that I made the decision to see what my options were with him. He was very warm and welcoming and spoke to me in laymens terms so I understood everything. I went home to Sacramento with more knowledge of the disease and its effects on me than I was ever able to get from any other doctor.

That November, I was back in Madison for the first of three surgeries (so far). The first was a grueling 8+ hour surgery. I was in the hospital for 4 days, and stayed in Madison for 10 days afterwards. I saw Dr. S and LuAnn several times throughout that stay and each and every time, they made me feel like I was their only patient, like all of my concerns were also their concerns and they wouldn't be happy until I was happy.

I have since been back to Madison two more times for revision surgeries. I am planning a fourth (and hopefully final) surgery for this Fall. I have never ONCE regretted making the decision to choose Dr. S as my surgeon. He is, by far, one of the most humble and wonderful people I have met. In my eyes, he's a rockstar, but to speak to him, he's just like you and me - although I don't believe you or I could make the most amazing positive changes he makes in peoples lives EVERY DAY!

Here's to you Dr. S! Couldn't imagine doing anything different! And I'll see you and Lu very soon! XOXO Kristi Davis



Kristi Before Surgery



With Dr. Siebert and Luann after surgery

 



Denise

Trying to express what Dr. Siebert has meant to us in our lives is like trying to climb a ladder to the moon. It is beyond the ability to fathom. There is so much to express. My daughter with PRS, Denise, and I, love Dr. Siebert with all our hearts. Because of this, we will try to put our appreciation and love into words. The words will be inadequate.

I first heard of Dr. Siebert on the Romberg’s connection. My daughter had already had one surgery in late 2001, here in Oregon where we live. It was questionably successful. Dr. Siebert had a new procedure with much more positive results. I was interested and wanted to learn more. After contacting Dr. Siebert’s office, I received a return phone call from Dr. Siebert. I was impressed, because doctors rarely call you directly. Even more impressive was that he spent 45 minutes on the phone with me, never rushing me or making me feel like we were limited in time. The funny part of this, that I never told Dr. Siebert about, is that I was driving from Los Angeles to Palm Springs when he called me. I thought I was following the printed directions from the computer, but I somehow ended up in San Diego instead of Palm Springs while talking to Dr. Siebert! It is 2 1/2 hours from LA to Palm Springs, and it is 2 1/2 hours from San Diego to Palm Springs! But it was well worth it!

Denise was not open to another surgery, but she agreed to meet Dr. Siebert, albeit not fully willingly. Her cousin went to school at the University of Wisconsin at the time, and that was the draw - we would visit her cousin in Madison also. Well, we went to our appointment with Dr. Siebert. You know the phrase, “You had me at hello”. Well, that was pretty much it. In less than 5 minutes, Dr. Siebert’s smile, reassurance, ability to make us feel at ease and his ability to let us know the depth of his caring, came through immediately. We both knew she would have the surgery with Dr. Siebert.

Dr. Siebert is a skilled surgeon, and has helped hundreds of PRS patients and hundreds of other people with a need for plastic surgery. Denise’s PRS has been minimized with the talent and care of Dr. Siebert. If that were all that he did, we would bless him. But Dr. Siebert goes beyond that. He loves his patients and their families and it shines through in his smile, his conversations with us (which seem to have no time limits), and his follow-through. He ensures that follow-up care is proper, and cheers up his patients in the hospital, where they are resting after surgery. He is one of those rare people who walks into a room and the room glows.

We love Dr. Siebert for his care and repair of PRS patients. We love Dr. Siebert for his love of us and all of his patients. We love Dr. Siebert because he understands and shares empathy. Dr. Siebert is truly an exceptional man. And, as I said in opening, these words are inadequate. Thank you, Dr. Siebert. You have meant the world to Denise. She feels like she could climb that ladder to the moon with you holding it.

Lisa
Denise's Mom