Thanks to the support we received through our 3rd Annual Gala, as well as individual and corporate sponsors, we have been able to fund necessary surgeries for Josh, Tiffany, Amanda, and Sephrael. Our success can truly be measured one face at a time.

With sincere thankfulness, we are pleased to report that a significant donation from the acclaimed rock bank, Coldplay, has made possible two more surgeries for Camille-America. Camille-America is five years old and was born with a large hemangioma on the right side of her face that involved her nose, cheek, lip, and ey region. The hemangioma continues to grow in size as she gets older which causes speech and eating problems. She has already undergone several surgies to reduce the tumor mass and rebuild her face. However, she is in need of additional surgeries that will cost $67,200.00.

By the end of 2006, the UCLA Craniofacial Clinic will have performed it's 10,000th reconstructive case on a child with a facial birth deformity. As the supportive arm to the UCLA Craniofacial team, the Facing Forward Foundation will celebrate this milestone.

 
February 28, 2007
Sponsor-A-Child Event

We would like to express our sincere gratitude for your support of the Facing Forward Foundation. Our event at Tengu restaurant on Wednesday evening, February 28th, could not have been a bigger success. We were there to celebrate the 10,000th surgery performed at the UCLA craniofacial clinic and all of you, our generous supporters. We also had the privilege of introducing our new executive board: Erin Marshall, who's own son was a patient of Dr. Kawamoto; Baker Smith, commercial director and owner of Harvest Films; Eric Suddleson, entertainment attorney with Nelson, Felker, and Toczek; John Whitesell, movie director and producer; Mark Tabit, Senior Vice-President-Investment with Wachovia Securities, LLC; Susan Whitesell, a thankful mom with two healthy children. All have offered their time and talent to help this foundation move forward.

Generous supporters adopted all 8 children showcased in our new Sponsor-A-Child program.

Denise V. is a 16 year old girl with Saethre Chotzen Syndrome. She has skull deformity causing increased intracranial pressure on the brain. She needs an immediate frontoorbital advancement and an eyelid ptosis procedure. Denise's surgery is scheduled for March 23, 2007. She was sponsored by Sean Whitesell.

America H. is a 7 year old girl, born with a large vascular malformation of the right face. She needs multiple surgeries to reconstruct her nose, upper lip, and right cheek. She was sponsored by Mr. and Mrs. Baker Smith.

Sima M. is a 2 ½ year old boy with Crouzon Syndrome. He has facial deformity and needs multiple surgeries to protect his eyes from further complications of craniosynostosis. He was sponsored by Mr. and Mrs. Patrick Bradley, Mr. Chris Bradley, and Mr. and Mrs. David Boreanaz.

Yan M. is a 3 year old boy with frontonasal encephalocele (brain bulging between the forehead, eyes, and nose). He currently needs multiple surgeries for facial bipartition and orbital reconstruction. He was sponsored by Mr. and Mrs. Patrick Whitesell and Mr. and Mrs. John Whitesell.

Dixon Z. is a 1 year old boy with hemangioma of the left face, inside the mouth, throat, and lower lip. He undergoes steroid injections and laser treatments. He needs reconstruction to his lower lip.
He was sponsored by Mr. and Mrs. Hirst.

Adrian B. is a 9 year old boy with Treacher-Collins Syndrome. He has a tracheostomy, no ears (conductive hearing loss), orbital/cheek malformation. He needs surgeries for bilateral total ear reconstruction, cheek bone/eyelid reconstruction, and removal of tracheostomy. He was sponsored by Mr. and Mrs. Eric Suddleson, Mr. and Mrs. Andrew McGinnis, Mr. and Mrs. Adam Keefe, Mr. and Mrs. Peter Tilton, Mr. and Mrs. Joe Collins, and Mr. and Mrs. Richard McGeagh.

Devany P. is a 2 year old girl with rare #4 craniofacial cleft. She needs orbital and eyelid surgery. She was sponsored by Danne King and Ila Waldman.

Besart A. is a 19 year old bomb blast victim from Kosovo. He requires surgeries for staged facial reconstruction with free flap and bone grafts. He was sponsored by several donors.

We extend a special thank you to Lauren Sanchez. Each year Lauren donates her time and talent at our events. She is articulate, witty and truly is a heart-felt supporter of our children. And, finally, thank you to Kathy and Gary Jones who underwrote the entire evening at Tengu. We are so grateful for the many people dedicated to Facing Forward.

If you were unable to attend, there are still many opportunities to help. We have many children just waiting to be sponsored. We urge you to pay a visit to our UCLA craniofacial clinic and see the interaction between the doctors and our kids. Meet the families who so desperately need your help. You will see what your money can do to immediately to change a child's life. Call Kathy Jones at (310) 866-0523 to schedule a clinic visit. The clinic hours are every Wednesday from 1:30 to 3:30.

Please refer to our website at www.facingforward.org for photos and more information on the children in our Sponsor-A-Child Program. We now offer Paypal and no donation is too small or insignificant to these children.

Please send your email address to info@facingforward.org for future updates.
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February 25, 2007
A Better Alternative Than A Tracheostomy

A Better Alternative Than a Tracheostomy
by: Lily's mother, Laura Stewart, MA

When I first met Dr. James Bradley from the Division of Plastic & Reconstructive Surgery at UCLA, my 10 day-old premature infant was being wheeled away into surgery. It was hard to feel confident that morning, but he told me not to worry and everything would be fine. I had to be positive and had to believe his words. My daughter, Lily, had spent the first days of her life intubated and was in need of surgery. She was born with a life threatening birth defect, an upper airway obstruction that left her unable to breathe or eat on her own.

There are conventional means to treat infants with severe upper airway obstruction that have been effective. Infants with conditions such as Pierre Robin Sequence, Stickler's Syndrome, Treacher Collins Syndrome, Nager Syndrome, and other craniofacial deformities are often given a tracheostomy to breathe and are fed through a stomach tube. However, there is another option, one that gives children a better quality of life, where they can be free of complications that the other modalities bring. For Lily and many others, mandibular distration osteogenesis or jaw distraction can be a better alternative.

My daughter Lily came into the world via emergency c-section, 7 weeks prior to her due date. Throughout the pregnancy, tests indicated she was healthy and during the 20 ultrasounds I received, a deformity was not detected. The moment she arrived, I could hear her cry echoing around the room. I assumed that meant everything was okay, but she was quickly removed from the room. The doctor's faces shared everything I needed to know, something was terribly wrong.

Lily was born with a condition called Pierre Robin Sequence. The specific characteristics of Pierre Robin Sequence involve micrognathia (small jaw with receding chin), glossoptosis and cleft palate. The causes of the condition are unknown and infants with this condition have both eating and breathing difficulties, the most necessary functions infants need to live. Truly understanding that Lily was unable to breathe or eat on her own left our entire family with tears in our eyes and a heavy weight upon our shoulders.

Promptly after birth, Lily was intubated and the neonatalogist sought treatment options for our daughter. After five days, the doctors in a metropolitan hospital, recommended Lily be treated through conventional means- placed with a tracheostomy and fed through a feeding tube until her jaw would grow. We were told the jaw would most likely grow, but that it would take anywhere between 1 to 5 years, if at all.

When hearing this news, I was overcome with emotion as visions of the next five years passed through my head. She would not lead a normal life, nor would the rest of our family. We would not be able to hear her cry for help, she would not be breast fed, let alone fed with a bottle. We would not hear her first words and she would struggle to communicate verbally most of her life. My greatest concern was the fact that with two "man made" holes in her throat and stomach, the possibility of infection would increase dramatically. I felt the risk of infection with an already compromised premature child, was too great. My husband and I hoped there was a different way.

We, along with family members, searched the Internet and made calls to doctors across the country. After numerous efforts, we found information about jaw distraction. Jaw distraction is a surgical technique that involves a gradual lengthening of the bones in the jaw. The process reduces the airway obstruction by advancing the tongue and opening the airway, thus allowing an infant to breathe on its own. We talked to many doctors on the east coast and were referred to Dr. Bradley at UCLA.

We also interviewed three other doctors in Southern California who had experience with the surgery. While Lily lay in the hospital with a machine breathing for her, we chose Dr. Bradley to perform the surgery because he had successfully performed the procedure on many newborns. We felt confident he could change the life of our 5- pound premature child.

Dr. Bradley and his colleagues conducted a study of neonates with upper airway obstructions during a 10-year period in two different academic centers. The results determined that infants who underwent jaw distraction had less hospital days, less emergency department visits, less respiratory infections, less reflux and the infants had improved feeding, growth, and speech. During the study, no deaths occurred for the children who received jaw distraction and 3 deaths occurred for children who were treated with conventional methods.

Karen Moormann from Orange County also gave birth to a child with Pierre Robin. Her son underwent the jaw distraction procedure with Dr. Bradley when he was 2 weeks old. "When faced with the decision of whether to do jaw distraction, we knew it was right for our son." Moormann said. "We wanted him to lead the best possible life". Moormann continued, "Throughout the last year I have participated in an online group with other mothers of children with Pierre Robin, now we are even more thankful we moved forward with jaw distraction. We have heard a number of children that have passed away from complications from the traditional methods of treatment." Children who have been treated via conventional means are at risk of death due to improperly placed feeding tubes, serious infections from the trache, pneumonia, etc. Everyday Moormann appreciates that her son is healthy, happy and is leading a normal life.

Are others aware that jaw distraction is available to them? I know how difficult it was to find up-to-date information about what treatment options were available for our daughter. The doctors at our hospital were unaware of jaw distraction and they actively discouraged us to proceed with this method.

I have met many moms of older children with upper airway obstructions who were unaware of jaw distraction when their children were born. They shared their deep concerns and wished they had known about the procedure much earlier. Some did move forward with the surgery at a later date with success, but wished they had known about jaw distraction prior to moving forward with conventional methods.

Lily was transferred to UCLA to undergo surgery when she was 10 days old. Her lower jaw was lengthened over a one-week period and she was successfully extubated after 7 days. We are thrilled with the results and with her progress over the last year and half. She can breathe on her own, she can eat, and she is speaking as well as any 18 month old could. Cognitively she is right on track and she loves to dance and play. The joy she has brought to our lives cannot be measured. Though she has been through some difficult times during the first few months of life, she is now happy and comfortable and truly enjoying every day. We are so thankful for Dr. Bradley and how he significantly changed our daughter's life.

It is my hope that by reading this article many more children will have a real future, just like Lily.

written by: Lily's mother, Laura Stewart, MA




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December 3, 2006
Thank you Annoucement

Thanks to the generosity of Mr. and Mrs. Donald T. Sterling, owners of the Los Angeles Clippers, for donating 100 complimentary tickets to the Facing Forward Foundation Children for the game on Sunday November 20th.
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December 25, 2006
Newsletter

Read about our children, doctors, and important news.
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