COARSEGOLD — What’s a smile worth? It’s something many of us take for granted — the typically upturned corners of the mouth for a little grin, an amused expression showing pleasure, the joy we convey with a toothy laugh, without even thinking about it.
One little girl in Coarsegold doesn’t take any of that for granted, because right now her smile lives only in her heart and her mind. For Hannah Lockwood, that will change soon, and we’ll be able to see her smile on the outside, as well.
Daughter of Sarah and Kevin Lockwood, and sister to four siblings including Katie, Eli, Michael, and Daniel, spirited little Hannah is almost six years old. She was born with Moebius syndrome, a rare congenital neurological disorder that affects about one in 50,000 children. Moebius is characterized by facial paralysis and the inability to move the eyes laterally, from side to side.
Like Hannah, most people with Moebius syndrome are born with complete facial paralysis and cannot close their eyes or form facial expressions. Limb and chest wall abnormalities sometimes occur, as well. People born with the syndrome have normal intelligence, although their lack of facial expression is sometimes taken incorrectly. Facial expressions help to demonstrate our inward feelings to the outer world. This is not necessarily so in Hannah’s case — right now, expression-wise, she doesn’t have too many.
“Hannah has complete facial paralysis and is getting to the age of being very social,” explains her mom Sarah, “and we are realizing how hard it is for her. She does not have the 6th and 7th cranial brain nerves which control facial expression and eye movement. Hannah cannot smile, frown, close her lips all the way, blink or move her eyes laterally. While her face may not show her expression, she has learned to show her feelings in many ways.”
Sarah says that anyone who knows Hannah loves the spunky little girl full of joy and happiness. Other than these physical differences, Hannah is just like other kids her age — she loves to play pretend, her mom says, especially superheroes, cops and robbers, or house. She likes to ride her bike, run, dance, play with her sibs, color and play with and snuggle babies. The fiesty little kid likes to be with people and doesn’t like to be left behind. They are a bustling family of five children with three of them having lots of doctor appointments.
“Kevin and I had decided very early on that we really did not like the idea of smile surgery. We love her beautiful face and the smile that God gave her — even if most people cannot see it. We also did not like the old type of surgery called the Gracilis transplant. The results were not consistent and it involved two 12-hour surgeries with about a year between each surgery and the time that you can ‘use’ your smile — an extremely long recovery.”
Last summer, before she started kindergarten, Hannah began to express in words how much she wanted her smile to go “up” like mom and dad’s.
“Hannah started talking about her smile and how it ‘looks different’ from everyone else,” Sarah explains. “We talked lots about how God made her perfect and how much we love how she smiles. This conversation continued for many months and she eventually expanded on her feeling and told us that she wanted to ‘smile up’ like Mommy and Daddy. It broke our hearts and we decided then and there that we would move mountains for her to be able to ‘smile up’ like she wanted. That is when we seriously started looking at other options for smile surgery.”
The Lockwoods did their research and discovered the work of Dr. Andre Panossian, a doctor who specializes in reconstructive surgery including smile reanimation for people of all ages, recognized as an expert in the treatment of facial paralysis.
“We went to the Facial Paralysis conference that he put on in Beverly Hills and walked away confident that we had found a surgeon who knew how to deal with facial paralysis caused by Moebius Syndrome. The surgery he does is so much less invasive than the Gracilis transplant. It is called the temporalis myoplasty with Panossian improvements. The new type of surgery is an eight-hour surgery that has much better results and can be used as soon as the swelling goes down, about a week after surgery. ”
As Hannah entered kindergarten, she was welcomed warmly by most of her peers and all of the incredible teachers and staff at Coarsegold Elementary. Still, says Sarah, their sweet daughter came home many days talking about kids who had made fun of her. Hannah also has Poland syndrome, giving her underdeveloped pectoral muscles, a shorter left arm and a little hand. She had bilateral club feet which were corrected by Shriners in Sacramento after the Lockwoods adopted her from China at 18 months. Hannah has a paralyzed vocal cord and half her tongue is paralyzed.
“We realized how much having a smile that she could use to show emotion would benefit her socially. In addition, this surgery will help provide lip closure which will improve her speech intelligibility — it is pretty hard to make certain sounds when you can’t close your lips — and her eating.”
Unfortunately, Dr. Panossian is not in the Lockwoods’ Kaiser network, and they would need to raise the money for Hannah’s smile by themselves. That’s where Karin Sayre stepped in, quietly at first, to see what she could do to help.
“I have known the Lockwood family for about eight years now,” Karin recounts. “I was preschool teacher for their four oldest children for two years each. Their youngest son Daniel didn’t come to preschool with me, as he had needs that were better accommodated at Coarsegold School, where he is thriving.”
Karin fell in love with each of the Lockwood children, she says, and was one of many who shared the emotional journey with them as they traveled to bring home Michael, Hannah and Daniel. Katie and Eli had already been adopted by the time Karin met the Lockwoods.
“We have become close friends over the years and I appreciate them so much,” continues Karin. “When Hannah started with us, Moebius syndrome was something I had never heard of. Not only did Sarah and Kevin teach us about the syndrome, but Sarah wrote a beautiful letter to the families of all of our other preschoolers. The letter, written as if from Hannah, told the other children how she was just like them. How she loves to play, paint, run, sing and dance. She told the children that although it might not look like it on the outside, she was laughing on the inside with them. It was a wonderful lesson in how God makes each of us special in His own way. The parents shared this letter with their children and the love pouring out of these three-to-five year olds was overflowing. Hannah was just one of the kids! To hear Hannah belly laugh is the best thing ever!”
Back in March, Karin and Sarah were having a conversation that turned to Hannah, and Sarah confided that her little girl wanted to have smile surgery.
“She shared with me that they had started to ‘sell stuff’ to start saving with the hopes of having the procedure done this summer.”
Karin knew they needed to save $36,000 — a fortune, really.
“At that point I decided that I knew a lot of people who loved Hannah and the Lockwoods like I did, so I started a ‘secret’ facebook page called ‘Hannah’s Smile’ with people that I knew.”
Karin told friends and family that she was going to accept donations of any amount for one month and then put the donations into a cashier’s check for the family. Names would be included, but no amounts attached to the names. She encouraged friends to spread the word, but to please keep it a secret.
“Honestly, I thought — wouldn’t it be amazing to raise $500 or even $1,000? Never in my wildest dreams did I see it reaching the final amount! The group that I started with 39 people grew to over 100 before the month was finished.”
Money came from everywhere, says Karin, “from people I didn’t know and from people the Lockwoods didn’t even know. I had a little girl come in with her mom and handed me $7, her whole savings because she wanted to help her friend smile. I had one family come in with an envelope of small bills that they had saved for an entire year from recycling money for family needs, but instead gave the entire amount to Hannah. I just cried.”
One person told Karin that they wanted to give to Hannah and “the PGE bill could wait!” A group from San Jose contacted Karin, volunteers from “Joni and Friends” who got together and sent several checks.
“Lastly, someone said, ‘how much to get it to $5000?’ — and that was the amount they gave. I was overwhelmed with these people. The love for our sweet Hannah was so obvious.”
Karin presented the Lockwoods with that check as seed money, and the Facebook page continues to grow. Now that it’s no longer a secret, the group has grown to 399 as of this writing, and about 1/3 of the total has been raised.
“With so many involved now, it’s so exciting to see the ‘thermometer’ move on Hannah’s Smile. I know that together we will make it happen for her,” Karin expresses with confidence.
Hannah’s mom Sarah says the group is now open to those who are interested in following their path to Hannah’s smile. The Lockwoods feel it’s a little weird to be consulting with a Beverly Hills plastic surgeon, but “when you are talking about your child’s face, I can’t imagine going with anyone but the best.”
Karin and all the many people who have contributed to Hannah’s smile are feeling really good about the prospects, and continue unabated with their mission to help the Lockwoods.
“I don’t know another family like them,” Karin attests. “Their love of God and family shows through all that they do. They have traveled across oceans for their children. Special needs have no limits in the Lockwood home. They are advocates for their children and educators to those who don’t understand some of the children’s limitations.”
The Lockwoods meet with Dr. Panossian next week to see about scheduling. Sarah says the doc is immensely kind-hearted and a dad to young kids, so he really knows how to make their daughter feel comfortable.
“Our sweet girl Hannah will be having smile surgery in the near future. We will be posting fundraising updates, prayer requests and information about the surgery when it happens. Thank you for your love and support of our beautiful little Hannah and our whole family. We have just been so blessed by the support of our wonderful community. I am thankful for any awareness that can be spread about our little Hannah. She is an amazing little girl, if I do say so myself.”
So, what’s a smile worth? Let’s wait a while. We’ll ask Hannah, and let you know.
Written by Kellie Flanagan, managing editor of SNO
Want to help with Hannah’s Smile? Ask to join the group here. Or you can email the Lockwoods at email@example.com
Read more about Dr. Andre Panossian here.
This letter accompanied the first check from Karin and friends towards Hannah’s Smile.
Sometimes there are people who enter our lives and change us forever without even knowing or trying. Sometimes there are those who spread the love of God to others just by living their lives the way that God intended.
You have given so much without knowing. You are encouragers and prayer warriors. You give so much and expect nothing in return. You have set an example of unconditional love and never ending patience with your children and all of their needs. You inspire and you are loved.
We want you to know that we love you. We love your children. We want to help Hannah’s wish come true of “smiling up.” We are friends (who don’t even all know each other) who all contributed to “Hannah’s Smile” and we are so excited to see her smile! We hope that we can help to make that happen this summer for her and for you.
Love and blessings ~
Edward & Karin Sayre, Noonkester Family, John & Katie Miller, Mike & Heather Sayre, Duerksen Family, Medina Family, Mills Family, Jim & Deanna Achilles, Alyssa Sayre, Cathryn Achilles, Alquist Family, Doreen Schwingler, Emmert Family & Friends, Rich & Debra Foss, Graham Family, Judah Fairfield, Patalano Family, Paul & Julie Fairfield, Ralph & Martha Fairfield, John Paul & Christine Avent, Menges Family, Matt & Deanna Davis, Irene Trapp, Isaiah & Anitra Peterson, Mark & Deborah Lillo, Ellis Family, Marvin & Katherine Griffing, Frank & Barbara Bigelow, Shirley Dostal, Melissa Courtney, Karen Meyers, Swan Family, Margaret Schroth, Patti Hooker, Tim & Heather McGrew, Julie Zopelis, Marmon Family, Kelsey Weaver, Judd Family, Brad & Karen Weaver, John & Sue Paris, Thompson Family, Angela Fairfield, Jesse & Noel Escobar, Anderson Family, Jamen & Emily Elliot, Fontanilla Family, and Yosemite Lakes Christian Preschool, and others. <3