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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1375 Comments

Reply Caro
6:54 PM on May 5, 2009 
Great website you have set up Terri. You write so well and I know that between family and friends, Hank will get the help he needs!
Reply Terry Bullard
11:00 AM on May 7, 2009 
Wonderful job on the site! You all are in our prayers. =]
Reply Susan Hopkins
5:58 PM on May 7, 2009 
The website looks fantastic!
Reply Susan Hopkins
6:00 PM on May 7, 2009 
The website looks fantastic!
Reply Janice
8:40 PM on May 7, 2009 
Is this the perfect meeting place or what??!! Wonderful idea and informative/reachable sight..Much love to all of you in the days ahead!!
Reply Sasha Gareau
12:42 PM on May 9, 2009 
Just let me know what I can do to help! We can do a fundraiser here at the shop. As long as I can cover cost of goods, We could do a night of shopping at One to Another with 40% of all sales going to help Hank. Just give me a call or shoot me an email and we can work out the details. My thoughts and prayers are with you! -Sasha
Reply Rachell
5:37 AM on May 11, 2009 
Hank, You are an amazing kid...just like your mom & dad :) ...and your lil' brother & sister, too :) and the dog...but NOT like those scary, jumping, furry spiders that scare your mom when she is working in the back yard. We know that you and Lucy secretly giggle when you see your Mom get scared by those silly spiders.... that's okay, cuz we do too ;)
Reply Robin Rauch
1:22 AM on May 13, 2009 
I heard about Hank from Pat Kittle in Colusa, where I also live. I will spread the word about your fundraisers. I will also hold all of you up in prayer.
Reply Lisa Colridge
12:31 AM on May 15, 2009 
Our heartfelt thoughts and prayers go out to your family. We will support your family and happily participate in the upcoming fundraiser events.
Reply Samantha Scola
1:11 AM on May 15, 2009 
We know you guys from Moore's and heard about your son there and on EGO. Please know that we are thinking of the whole family. Please take care.
Reply Tom Dermody
11:50 PM on May 18, 2009 
To Hank and Family- Pat Kittle of Colusa and I are good friends. He told me about Hank and one thing that I have found it getting a child involved in the outdoors does great things. Every year we put on a Special Needs Event for some very "Special" children. We would like to have the whole family come and join next years event. For more information please email me or you can contact Pat and he knows all about the event. My thoughts are with you and I hope to hear from you. Take care
Reply Pat & Shirley Crawford
6:55 PM on May 20, 2009 
We pray enough $ will be raised to ensure this treatment and surgery can be done. Our continued prayers will be with Hank and all his family for a speedy recovery. Sincerely, Pat and Shirley
Reply Julie Hendersen
12:40 AM on May 25, 2009 
Hi Terri, I am Barbara's friend Julie from Tracy. I was diagnosed with Morphea when I was pregnant with Mike 17 years ago. I am fortunate because my morphea does not affect internal organs. I just have marks on my skin that look like bruises. I will be at the winery fundraiser! i pray for Hank and your family. God Bless Julie Hendersen
Reply Randy Santos
7:13 PM on May 28, 2009 
Dear Terri, My name is Randy and I worked with Jeff at McDonalds many, many years ago and recently got in contact with hime through classmates.com. My prayers go out to you and your family while you go through this difficult time. My wife and I are looking forward to going to your next event at the winery. Take care and God Bless. Randy
Reply michelle lowery
3:25 AM on May 30, 2009 
Terri, Kendyl brought home a BCS news letter and I was pleasantly surprised to read information regarding Hank! :0) Please mail me a flyer to attend Color Me Mine Michelle Lowery- 9017 Devon Crest Way, Elk Grove CA 95624
Reply Ar'tanya Yusuf
12:56 AM on May 31, 2009 
We will be praying for your family. We will also offer our support via the upcoming events. Only the best to you, The Yusuf Family
Reply Debby Mingua (Krystan's Mom)
8:17 PM on June 1, 2009 
Hank's story is very touching, and we will be praying for him and the rest of the family.. Hank is such a wonderful and sweet young boy...and we would love to help support Hank so he can get this surgey and get better! We love you Hank! Thank you for having this flyer sent home, because I had no idea, I will pass this along to my friends and family :o) God bless you! Love, Krystan's family
Reply Tricia Estep
6:19 PM on June 2, 2009 
It was so good to see you and talk today. My heart goes out to you and your family. I plan to share this with my family and we will keep you in our thoughts and prayers and offer our support in the upcoming events. Take care and God bless! Trish
Reply The Allison Family
10:55 AM on June 3, 2009 
We love you Gibbs Family! I'm sorry we are so far away and we can't make it to the fundraisers. But, please know we have you in our thoughts and prayers. oxoxoxox
Reply Lisa Saunders
7:47 PM on June 4, 2009 
Hank is in our prayers. We are a family from BCS and we'll continue praying for him and your family.
Reply Robin Neilssen
9:24 PM on June 8, 2009 
Hank, you are in my prayers. You are a special child created by God for great things. You will remain in my prayers and I hope to see you on my next visit to CA.
Reply Carol Neronde
2:11 PM on June 10, 2009 
I would like to donate a 50.00 giftcard to the event this weekend at the winery. Would someone pick it up at the store(Moppet Shoppe), or should I mail it? Please advise me at [email protected] Warmest regards to Hank, Carol
Reply Tammie D. Stammers
10:11 AM on June 15, 2009 
Wishing you all the very best of luck- what a beautiful family- Hank, you are very lucky to have such wonderful parents who will do so much for you! I will be thinking of you, and I hope that your surgery goes well! (Tammie- PRS since early teens, and have had many surgeries myself.- am now 39, with 2 kids of my own)
Reply Anne Fiksdal
1:53 PM on June 18, 2009 
What an amazing story you have unfolding right before you! The out pouring of love and support from everyone, the generosity...incredible. God has great plans for Hank and his story is just being written...We will be keeping you all in our thoughts and prayers. :0) I miss seeing you everyday..someday again!
Reply Shannon Bettencourt
2:02 PM on June 26, 2009 

Thank you for sharing your story with me.  I am touched and truly amazed at what a warrior I think it was said, that both you and your son are.  I am assuming your whole family for that matter.  What a special and brave little boy you have.  My loving thoughts and prayers are with you and your family

Reply Krystal McElree
6:55 PM on July 20, 2009 

Too much for words at the moment... See everyone on Saturday...

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

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 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 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 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 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 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 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 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 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 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
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 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.

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