Helping Hands for Hank

Fighting Parry Romberg Syndrome

Guestbook

 

 Thank you to all who have contributed, viewed, joined or commented on our site.  The support for Hank has been amazing and overwhelming!  We so appreciate it! Hank has endured four surgeries thus far.   Although Hank still has a ways to go, he is happy and we are glad to have had a  break from surgeries. The last four years have been very challenging, as any parent of a child with a rare illness will tell you.

Hank is enjoying 7th grade in our new location and is loving his school. We will be traveling to Madison, Wisconsin in June 2014 for another surgery with Dr. John W. Siebert.

Please continue to keep our family in your prayers. Hank loves to hear from others, so please leave a note!

 

With Great Appreciation,

The Gibbs Family

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41 Comments

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Reply Tanya
5:19 PM on December 5, 2012 

Hi there, I saw a post on Facebook through my friend Karen about Helping Hands for Hank.  I live in New Zealand so can't unfortunately buy a tamale for the fundraising effort, so I've put a little money in via PayPal, it's not much, but every little bit adds up.  Best wishes to Hank and family.

Reply helpinghandsforhank
3:25 AM on September 26, 2012 

Seth, please send an email to: [email protected] Your email link is not working and we would love to talk to you about the surgical treatment Hank has had! Glad you found us!

Terri Gibbs (Hank's mom)

Reply Seth
6:51 AM on September 23, 2012 

Hi, I hope all is well for Hank! What a brave kid! I'm a 22 year old guy in California and I've not been doing well for a while but I have hope now! The right side of my face has been atrophying for atleast the last couple years and I've been trying to figure it out, seen atleast a dozen doctors and specialists who all blew me off. I guess I got lucky in entering just the right string of words in google and found PRS. I guess I'll be scheduling an appointment in the morning... I intend to have the 'flap' transfer and I've gotta say, I'm scared! Hank must be an incredible kid, and I hope you all the best! Also, I can tell he's gonna be a stunner like his dad ;) If you get a chance, I'd really appreciate if you could email me or just reply here, I'd like your opinion of the character of Dr. Siebert. When I googled him it looked like he's the man to see for this treatment but there are also strange accusations of misconduct. I assume said accusations are completely false, however.

                       Thanks and best regards,

                                   Seth

Reply helpinghandsforhank
2:45 PM on August 13, 2012 

Thank you for all the kind comments and donations! It means a lot that we have had a hand in raising awareness for Parry Romberg Syndrome!

Hank likes to read through your messages...and it makes our day! Hank is getting ready for his next surgical go around...Please keep him in your thoughts and prayers on October, 3, 2012.

Reply Ginny Mulligan
6:59 PM on November 11, 2011 

Hi Hank,

I just read your story and watched your videos. Thank you for your inspiration. You are a brave young man and a role model for others who must deal with unknown diseases and scary surgeries.

We have just learned that our 5 year old grandson, Liam, was diagnosed with PRS. Like your parents were a few years ago, Liam's family is eager to learn everything there is to know about PRS. The written word is freightening, but hearing from you (video) gives us hope for Liam. God bless you. 

You  are ALREADY making a huge difference in this world at the ripe old age of ten! Stay the course.

Liams' Grandmother, Ginny

Reply SUSAN BURNS
7:26 PM on July 15, 2010 

GOD BLESS YOU HANK' AND WE ARE PRAYING FOR YOU. TRY AND BE STRONG'  AND KNOW THERE ARE PEOPLE THAT CARE ABOUT YOU. LOVE BOB&SUE BURNS....

Reply Mike's Mom
2:28 AM on July 10, 2010 

Hank - I saw your story on News 10 tonight, and was so moved by it!!  You are a remarkable young man, and have a wonderful family around you.

 

My son Michael was injured very badly in a car accident 3 years ago.  Our who family was forever changed.  It's been a long 3 years for us all, but with the love and support of family, friends, and complete strangers, Michael has made a remarkable recovery.  He's got many physical injuries, but is hoping to be able to stand and take a few steps someday soon.  He also has brain injuries, which means he can't remember some things, forgets what he wanted to say sometimes, and gets very frustrated with himself.  But we're here for him, and will help him with whatever he has to face - just like your family is changing and adjusting their lives completely to insure that you get the best care possible.  I'm sending in a donation to your fund to help in a small way with that.  God Bless You, Hank - you will be in my thoughts and prayers, and I will be looking for updates on your progress!!

Reply Karin
11:54 AM on July 9, 2010 

To the Gibbs family.

My name is Karin. I live in Orangevale, CA and saw your story on Fox news last night and was compelled to reach out to you. At age 24 I was also diagnosed with Parry Romberg's Syndrome. My story is very similar to yours. When I was about 22 an aunt of mine called my parents, after seeing me home during the holidays, and told them something was wrong with my face. Once they really looked and recognized something really didn't look right I started seeing doctors. After being tested for Bells Palsey and having MRI's and Cat Scans I was told no one knew what it was and as long as it didn't hurt I shouldn't worry about it. My parents refused to accept that as an answer and spoke with a family friend, who happened to be a maxilliofacial surgeon. He was the first to recognize that I was actually loosing tissue and sent me to a friend of his in the same field. It was he who first diagnosed me with PRS. Like you I immediately went to the internet and researched as much as I could. I also quickly realized that I was, in a way, very lucky that my active aggressive phase of the disease came on at about age 19-20 (from what we can see in pictures) because I was already finished developing. At my worst, I had major tissue loss on the right side of my face (my cheek and part of my chin were sunken in and felt paper thin), and have scapal tissue loss on the top of the right side of my head (which feels kind of like a small part of my skull has sunken like my cheek did). In late 2005 I went to UCSF and met with Dr. William Hoffman, Chief of Plastic and Reconstructive Surgery who confirmed the diagnosis and spoke to me about my options. We continued to watch the progression for a period of time and in February 2007 I had my first fat injection surgery. He extracted fat from my lower abdomen and injected it by needle back into my face. After my first surgery I experienced some tissue loss (which was to  be expected) and had a second injection surgery in March of 2008. Since then I am regularly monitored by Dr. Hoffman but have not required additional surgery. Other than the scalpal tissue loss, which couldn't be corrected, I have no lasting effects from the disease. He and his staff at UCSF have been simply amazing throughout these past years. I'm now 31 and have a 10 month old daughter. I want to thank you so much for sharing your story about Romberg's syndrome. I know that the more exposure it gets the more that will be learned about it and hopefully future doctors will be able to diagnose it more quickly. When you have something so rare, it's also nice to know that someone nearby has experienced the same thing. Please feel free to contact me anytime (my email is [email protected]). Best of luck to you Hank and to you family! I hope this next surgery will be your last. My thoughts and prayers will be with you.  

Reply Lloyd Ellis
3:59 PM on July 5, 2010 

Hank you are an amazing human being. I have never met you but to read your story gives me inspiration beyond my wildest dreams. I am sure there are people out there that are praying for your full recovery and I will personally say a prayer for you. Keep up the curagious fight young man you are an inspiration to all of us.

Reply Scott
12:24 PM on July 2, 2010 

I am looking forward to meeting you at the fundraiser on July 10th with my Pampered Chef booth. up to 40% of what is sold will be donated to your cause.

Reply Jenny Heeren Stutzman
4:32 PM on June 22, 2010 

Terri, I was so moved to read Hanks story and to see what you and your family have been  doing to fight this disease and bring awareness!  I had never heard of it.  When I read that your sister calls you a Mother Warrior, I had to smile because that is exactly what we are. Mom's do fight for their kids! You go girl! Please know that I will pray for Hank and your family as you travel again to NYC for his next procedure. I will continue to pray for his healing and recovery!

Reply Tricia Bell
1:35 PM on June 10, 2010 

To Hank and his Dad - thank you for letting my son, Ritchie, toss the football with you both at Parent's Appreciation Day at BCS.  I had seen the flyer, but didin't connect it with Ritchie's friend.  I also work for a public school with special ed 7th & 8th graders who are emotionally disturbed and it was the end of the year and my brain had turned to mush, so I just didn't connect.  What an awesome family you all are,  Still planning Ritchie's birthday party, but haven't chosen a date yet, but will let you know when it is and we hope Hank will be able to attend!   Yeah, 3rd grade is done and our guys are moving forward. My hat is off to all of you, as I can't imagine how time consuming it all is - but definately worth every minute of it.  Our prayers and thoughts are with all of you.  We hope to make it to The Wrangler.

Reply Darlene Baker
3:01 PM on May 31, 2010 

Hi Gibbs Family---I am Debi Corbella's mom.  Debi's step dad and I were at their house last night and she was telling us about  Hank and so we are contribiting $50.00 towards Hank's fund.  We hope this can help a little towards all the expenses that have been incurred.  Hank sounds like such a brave little guy and we feel that God has led us to help even a little bit.

 

                           In Christ's love--Darlene and Bill Baker