|2010 at the launch of #threelittlebears|
Two years prior to having my first son, I was diagnosed with an autoimmune disease called Myasthenia Gravis (MG). After surgery and a lot of hard work, my husband and I asked my doctors if I could have children. All the doctors we consulted told us that an autoimmune disease could not be passed to our child and that the greatest danger for pregnancy would be to me. After my first son was born, my son could not eat on his own and had several physical abnormalities in addition to muscle weakness. At the time, everyone thought these symptoms were temporary and when antibodies from my MG burned out of his body, he would be completely healthy and normal. We brought him home from the NICU after five long weeks with a feeding machine, heart monitor and a lot of fear.
|Zack in the NICU at New York Hospital|
Eventually some things got better and some did not. He was off the feeding machine at three months old but eating took a lot of work. Although he did not have MG, he could still not close his mouth, keep fluid in his mouth and speaking would prove to be very challenging, among other things. We searched high and low for answers for years that no one had. Doctors could find no other cases where this had happened. So we had another child, thinking at the time my oldest would recover and feeling sure that this could not happen again. I underwent a weekly plasma cleaning process called plasmapheresis to proactively clean out the antibodies in my system that may have interfered with my first son's development.
|In the NICU, babies are often called by their last name, |
in this case, Baby Lori
Despite this, my second son Luke was born with the same symptoms and, as we would learn a few years later, he was also hearing impaired. It was almost more devastating than the first time. Now doctors really didn't have any answers. My third son came quite by surprise just fourteen months later, but although physically he was somewhat better than the first two, he still had some of the same facial challenges and weakness. I now had three small children with disabilities and no hope for improving any of their physical challenges. It was overwhelming to say the least.
For seven years, we went from doctor to doctor for help. Finally, my husband found a surgeon in Toronto named Dr. Ronald Zuker who pioneered something called a muscle transplant surgery where he took a muscle from their leg and transplanted it to their face. The procedure had been created for children with nerve or muscle damage in their face to help them smile, speak and eat more clearly. Many of these children had a syndrome that caused facial paralysis.
After much discussion and testing, he agreed to take on our case and operate on our oldest son. I wish I could tell you this was an easy decision and we said, great where and when, but that would be a lie. I was dead set against the surgery. It required two separate 10 to 12 hour surgeries that would be three months apart and require a substantial recovery process. There was no guarantee the procedure would work as our case was one of a kind and we wouldn't even know for three months after the first surgery if it did work.
At this point in our lives, I had come to believe that nothing could help us and we needed to accept our fate. Seven long years of disappointment and disillusionment was almost impossible to overcome. Slowly cutting off family and friends, I lived in a very small sphere between my professional life where I told virtually no one and my personal life where we had lost every semblance of privacy. Everywhere we went people stared at us, young or old, it didn't matter, the insensitivity of complete strangers was boundless.
I believed then there was no magic solution. There were several doctors in Manhattan we consulted that told us it wouldn't work and so I would walk out the door and say, "See that's it, it won't work." But my calm and determined husband, wouldn't let it go.
He would look me in the face and say, "Lisa, they have to be able to speak clearly, eat properly, to get a job and function normally." But I didn't live in the future like he did. I lived in the here and now, and the here and now was more than I could bear. What if it didn't work? What would I tell my eight year old son about how unfair life was when he already knew all too well how unfair it was?
I finally agreed, or gave in, is more like it, and we had the procedure. Twelve weeks later, almost to the day, I went shopping in Target with my boys and I looked at Zachary and I saw it. I saw his face move for the first time in his life. I shouted to him to go look at himself in the restroom mirror and see if I was right. He did and came out shouting, "it worked Mom, my face is moving." I was so flustered i started pushing someone else's cart around the store until I realized my purse and keys were somewhere else in that giant store. Who cared? My son's face was moving.
|Can you imagine trying to explain to your child why |
they are so different from other kids when even you don't know why?
My children had more than 8 transplant surgeries over the next 4 years and now, all are able to smile and speak and eat easier. Although their journey is far from over, we have much to smile about. When my oldest son was first able to smile fully, I can tell you it brought us, and our friends who knew him, to our knees. You can live so long without something that you tell yourself it doesn't matter. You tell yourself you don't need it and you believe it. Then one day it happens and it almost too much to comprehend. It took us, and Zack, many months to absorb the change.
|Luke right before his second surgery at Sick Kids Hospital in Toronto. He has his favorite stuffed animal to bring in the OR with him.|
|Zack at our first Operation Smile benefit|
|Kathy and I were just kids when we met and this week our life will really come full circle|
Since we launched this project in 2010, we have raised almost 1 million dollars from bears and fundraisers across the country. Kathy and I met at age 13, the same age my oldest son Zachary is right now.
Dr. Zuker is one of hundreds of medical volunteer for Operation Smile and to support their work has been more than fulfilling for all of us, it has given us purpose and allowed us to help make sense of our own circumstance.
|Kathy VanZeeland with my boys #smile|
Next week, we will be honored for our support at the Operation Smile New York Smile event on May 1st at Cipriani Wall Street. Kathy's friend Michael Strahan will be a special guest and Natalie Morales, a longtime Operation Smile supporter will host. The night will celebrate Latin America where Zack, my husband Mat, Kathy and I went on our first mission to Panama. Dr. Zuker will be at the gala. Last year, in Panama,we got to personally deliver bears to patients. It was an incredible experience. How beautiful for me to be able to share this moment with my friend who has done more for me than she will ever know.
|In Panama at the hospital with my son Zack|
|Just one of the sweet patients that we gave #bears to. So special.|
|With singer Jon McLaughlin at our second fundraiser|
There is no greater gift you could give a child and their family, than a smile and a new life. I can remember the exact moment when my son's first transplant started to work. It was life defining and I know that when Operation Smile patients and their families see that bear, for the rest of their lives, they will know that, just like my day in Target (see you really can get anything at Target!), it was the day they received their smile. Nothing better than that. Nothing. Imagine being able to trigger that kind of happiness.
New York Smile EventThursday, May 1, 2014Operation Smile honors Lisa and Mat Lori, Kathy Van Zeeland and Bruce Makowsky,Sharif Atkins and Microsoft CorporationNatalie Morales to host; Michael Strahan to appearOperation Smile Global Headquarters - Virginia Beach, VA (April 11, 2014) - Operation Smile, the world’s largest medical charity of its kind providing free cleft surgery and care, will hold its 12th annual Smile Event in New York City on Thursday, May 1 at Cipriani Wall Street.The evening honors Lisa and Mat Lori, along with Kathy Van Zeeland and her husband, Bruce Makowsky, with the Founders Circle Award. The two families are being recognized for their dedication and contribution to the work of healing smiles worldwide. Together the Lori and Makowsky families have raised nearly $1 million for Operation Smile.The Smile Event will also honor actor Sharif Atkins with the Universal Smile Award for his work as an official Smile Ambassador. The Corporate Humanitarian Award will be presented to Microsoft Corporation for their continued generosity and donations. NBC NEWS’ Natalie Morales will serve as Master of Ceremonies for the evening, and Michael Strahan will make a special appearance. The Smile Event will highlight the Operation Smile’s work in Latin America with a Latin American theme for the evening."It is an honor and privilege for us to be accepting this award,” said Lisa Lori. “We are proud to share this with our dear friends, Kathy Van Zeeland and Bruce Makowsky, and to continue to support the incredible work of Operation Smile throughout the world."The Loris, Mrs. Van Zeeland and Mr. Makowsky have helped Operation Smile share the joy of a simple smile through their many fundraisers and initiatives. Most notably, they launched an extraordinary project called, The Three Little Bears, named after the Lori’s three sons, Zachary, Luke and Griffin, who were all born with facial paralysis. The Three Little Bears initiative was developed, designed and co-created by childhood friends, Lisa Lori, a writer, and Kathy Van Zeeland, a handbag designer.“Operation Smile is an outstanding organization and we couldn’t be more proud to be a part of their family.” said Kathy Van Zeeland.The Three Little Bears initiative allows for a commemorative and cuddly teddy bear to be given to comfort children worldwide before they go into surgery. The honorees, and the Lori’s eldest son, Zachary, traveled to Panama last year to witness, first hand, the work of Operation Smile. The experience solidified their commitment to change the lives of children globally. Mr. Lori is a Managing Director and Partner with New Mountain Capital. Mr. Makowsky is a real estate developer, designer and entrepreneur.Sharif Atkins will be the recipient of this year’s Universal Smile Award. Since 2011, Mr. Atkins has been a Smile Ambassador strongly supporting the organization's global efforts. He has raised over $10,000 to heal smiles through Crowdrise and more than $5,000 through another fundraiser during National Smile Month in 2012, which helped provide life-changing surgery for 20 children. He also volunteered on a mission in Ecuador in 2013. Mr. Atkins is currently starring in USA Network’s series White Collar.Microsoft Corporation will receive the Corporate Humanitarian Award. Microsoft’s continued generosity has launched Operation Smile to become a truly 21st century organization. Leveraging resources and partnerships, Microsoft has facilitated donations of more than $1 million in technology, in addition to invaluable time and commitment from its team to Operation Smile’s mission.“Microsoft has become our partner in the true essence of the word. They got involved in the cause, looked at our needs and offered solutions that empower us to become a better organization,” said Ruben Ayala, Operation Smile Senior Vice President of Medical Affairs.Proceeds from the evening will support children and surgeries specifically in Latin America.About Operation Smile (www.operationsmile.org)Operation Smile, headquartered in Virginia Beach, Virginia, is an international children’s medical charity that works in more than 60 countries, whose network of more than 5,400 medical volunteers from over 80 countries is dedicated to helping improve the health and lives of children. Since its founding in 1982, Operation Smile has provided more than 200,000 free surgeries for children and young adults born with cleft lip, cleft palate and other facial deformities. To build long-term self-sufficiency in resource poor environments, Operation Smile trains doctors and local medical professionals in its partner countries so they are empowered to treat their local communities. Operation Smile also donates medical equipment, supplies and provides year-round medical treatment through its worldwide centers.For updates on Operation Smile’s global efforts, visit www.operationsmile.org,www.twitter.com/operationsmile, and www.facebook.com/operationsmile.PRESS CONTACTS: