Naomi's Story
What is Naomi's skin deformity?
August 2002
When Naomi was born (May 13, 2000) her right arm looked just like her left, except for the skin color (almost black). A "Large (or Giant) Congenital Hairy Nevus" (a type of mole) covered her arm. 1 out of every 500,000 babies is born with one. Naomi's goes from her shoulder down to her knuckles, encircling the whole arm (that's 7 to 8% of her body surface). The mole is growing in proportion to her body and producing hair over most of it. In some areas the nevus is thick and leathery, in other areas it is thin and fragile. The mole prevents the formation of "Subcutaneous Fat" (a layer of fat, just under the skin, that pads the body everywhere) which make the arm thinner then the other. There are more then 70 satellite "Nevi" over her body of various sizes. Nonmalignant tumors are growing below the skin that gives the mole a lumpy and folded appearance.
The Health Risk from a "Large Congenital Hairy Nevus"
Naomi is at a high risk of developing melanoma (the most serious form of skin cancer). Melanoma can rapidly spread to the brain, spinal cord, organs and skeletal bones. Also, these same "Congenital Nevi" cells that appear on her arm can form in the central nervous system. This condition, known as "Neurocutaneous Melanosis", has very limited treatment and no known cure. It causes neurological problems, such as hydrocephalus (water on the brain), developmental delays, and seizures. It is potentially fatal. There is a 33% chance that Naomi has "Congenital Nevi" cells in her central nervous system and an 11% chance that she will develop neurological problems.
What Can Be Done?
Monitor Naomi's nevus (which would likely develop melanoma); amputate her arm (before melanoma develops) or reconstructive surgery (to remove the risk of melanoma from her arm). Naomi's parents decided on reconstructive surgery and for Dr Bresnick to help. Stephen Bresnick M.D., D.D.S. is 1 out of about 20 surgeons in the United States that has the experience and skill needed. Both a dentist and a pediatric plastic surgeon, Dr Bresnick has operated on many young children with different types of deformities and trauma, including severe burns and flesh eating bacteria.
Reconstruction will require multiple surgeries and be done over a period of time. July 12, 2002, Naomi had her first surgery (only a 2 hour procedure). She arrived at Encino-Tarzana Regional Medical Center at 7:00 AM and left at 12:30 in the afternoon. The hospital's gross bill was $19,476.90. Even though Naomi's parents have insurance, insurance companies have claimed that procedures to correct children's deformities are not medically necessary and are labeled "cosmetic". In 1997 children with deformities were totally denied coverage for reconstructive surgeries 53.5% of the time. The gross cost to reconstruct Naomi's arm may reach $400,000 or more.
San Gabriel Valley Examiner
Volume VI, issue no. 177, September 11-17, 2002
Naomi, 2, Needs Our Help
ALHAMBARA: Two-year old Naomi Rose Ovalle was born with a rare skin disorder. It is called a large congenital hairy nevus (a type of mole). 1 out of every 500,000 babies are born with one.
Naomi's ugly mole is on her right arm and goes from her shoulder down to her knuckles, encircling the whole arm. At birth she had a 5% risk of developing melanoma (the most serious form of skin cancer). Now she is at a 10 to 15% risk. Naomi will most likely develop melanoma. One surgeon suggested "taking off the arm." One other surgeon would not take Naomi (it was too difficult). Stephen Bresnick M.D., D.S. is probably 1 out of 20 doctors in the United States who can help Naomi.
The estimated cost of medical needs may reach $90,000 or more. Naomi is insured under her mother Julie, who was let go from her job in July. David's (Naomi's father) insurance will not put her under his insurance and might not put her on during open enrollment in November, because of this "pre-existing condition." Julie has COBRA insurance, which cost just over $700 dollars a month. After 18 months, from July 2002, Naomi might not be insured, if David's insurance does not pick her up in November. Also, Dr. Bresnick is under the COBRA insurance, but the hospital is not.
David and Julie are desperately raising funds fore their daughter's medical needs.
They have been on NBC 4 and Telemundo 22 and 52. A fund has been set up: Gateway Community Church c/o Naomi Ovalle, P.O. Box 3086, Alhambra, CA 91803.
WHITTIER DAILY NEWS
Tuesday, September 17, 2002
Operation needed to save child's arm.
Parents need $90,000 for skin-replacement surgery.
By Ben Baeder, Staff Writer
PICO RIVERA: The parents of a 2-year-old girl born with a rare condition that left her entire right arm covered with a hairy mole had a tough decision to make: amputation or risky and painful skin-replacement surgery.
Naomi Rose Ovalle was born with congenital nevomelanocytic nevus, a type of mole that affects one out of every 500,000 newborns. Doctors told Julie and David Ovalle the mole would likely become cancerous. The parents opted for skin surgery. However, the couple has only $1,000. The surgery will cost $90,000.
So far, donations have come primarily from concerned citizens who saw Naomi's story on television news programs and from donations at Gateway Community Church in Alhambra. "Hey, It's a start," said Julie Ovalle of Boyle Heights, struggling against tears. "If people don't have money, they can still help. We just ask that they please pray and tell their friends to pray."
On Monday, more than 50 children at the David Torres Kenpo Karate Studio in Pico Rivera took pledges from neighbors and friends and raised about $500 for the Ovalle family by holding a kick-a-thon. They also promised teacher David Torres, Julie Ovalle's cousin, that they would pray for Naomi. "We try to do things like this for kids who have cancer or who are very sick," Torres said. "You get to help someone you don't even know."
"Justin Estrada, 6, delivered 122 kicks and raised $75. His mother, Amy Estrada of Pico Rivera, said it was easy to raise money for Naomi after she told donors of the little girl's plight. Children at the studio were well versed in Naomi's story. "They're like taking some off and putting it on her arm," said Olympia Martinez, 6, while pinching the skin on her stomach and her leg.
For Naomi's surgery, doctors will remove the hairy skin from Naomi's arm and replace it with skin from her stomach.
In anticipation of the surgery, which will take place some time this fall, doctors have been expanding Naomi's stomach with chemicals to create extra skin. After the arm's skin is replaced, doctors will use skin from Naomi's thigh to replace other patches of mole and hair, which dot Naomi's body.
Children at the studio kicked up to 187 times in the five-minute span. They panted and sweated, but not one stopped. "We know it's getting worse," said Olympia's older sister Paloma Martinez, 7. "We're helping because it's sad, and that's it."
Ben Baeder can be reached at (562) 698-0955, Ext. 3024, or by e-mail at ben.baeder@sgvn.com
Happy Holidays
December 2002
We hope this letter finds all of you doing well and enjoying this Holiday Season!
After a busy year and looking back on the past 12 months, we feel so grateful and blessed for what you have done for us. The number one thing that Julie always asked for was prayer. She always reminded me, "All things are possible with God". So, Thank you for all your prays and don't stop! We need all the prayer we can get.
Thank you also for getting "Naomi's story " out to all your family and friends. Through this, we have been able to meet people who have helped us with issues of Insurance, Media, Fundraising, etc. We still need help in meeting people who have an inside to The Media or Businesses.
And of course, thank you for your financial help. I believe, some of you feel that Naomi financial needs are so great that your help would only be "a drop in the bucket ". If it keeps on raining, even a light sprinkle, that bucket will eventually get filled. A person from work recently asked me, "How can you afford this ". My responds was, "I can't ". Julie and I know it is impossible for us to pay for all of Naomi's medical needs, but we also know if we don't ask for help we wont get it.
With this letter we have send you information about Naomi's condition so you have an idea of what Naomi faces and you can tell others. There is also a green flyer "Sponsor Naomi". We know that everyone has there own financial needs (rent, bills, groceries, etc), but we are asking if you could continue helping Naomi with a "Monthly Sponsorship". The amount is really up to you. Remember, "Drops in the bucket ". Give what is comfortable for you. If you can't give financially, pray for us and tell others about Naomi.
Contributions payable to Gateway c/o Naomi Ovalle are tax-deductible and will only go to Naomi's medical needs. Contributions payable to Naomi Ovalle will help pay for public awareness (fundraising) and the special needs Naomi has.
January 4, 2003 is Naomi's next surgery. As this day comes near, we have put ourselves in the state of mind, "Expect the worse and hope for the best ". Dr Bresnick will be able to take a good look at the muscle tissue and see if there are any melanoma cells where he has taken off the mole (from the knuckles to her elbow). The following week (Jan. 11) the Tissue Expander will be taken out and the New Skin put in place. Naomi is in good sprits. She doesn't know that it's not normal to go to the doctors every week (and now twice a week). As for the Tissue Expander, she probably thinks everybody has one.
Happy Kwanzaa, Merry Christmas, Happy Hanukkah, Happy New Year and May God take care of you and your loved ones this coming year.
Friends for Naomi
Sunday, December 12, 2003
Naomi is doing great! After a total of six surgeries (five this year), no melanoma at the sight of the skin grafts and all the new skin took. Besides some scaring at the base of her thumb and pigment still evening out, it is amazing to see how good Naomi's arm looks. We are preparing for two more surgeries at the end of January 2004. This should be the last of the major reconstructive surgeries for her arm.
So many people have touched our lives. Gateway Community Church has always been there for us. Our friends at church set up a medical fund, kept us in their prayers and gave from their hearts and pockets. Telemundo and KNBC4 have done a beautiful job presenting Naomi's story. Lorel Kane has been instrumental in having her on NBC4 news. Stories aired on August 2002, December 2002 and August 2003. Telemundo was the first to air Naomi on channel 22 and 52. Since then they have aired six stories about her. Encino-Tarzana Regional Medical Center has been so kind to Naomi. Every time we go, she is glad to see the staff and has started remembering some of their names. Stephen D. Bresnick, M.D. is a gift from God. He has helped us in so many ways; words cannot describe our feelings for him. Dr. Bresnick and his staff have always been willing to do what it takes to help Naomi. And because of people like you, we have been able to stay out of the red ink. Naomi's first four surgeries have been financially taken care of. Pending are her fifth and sixth surgeries.
The moles continue to change and new ones have appeared. They are on the back of Naomi's head, right eyebrow, left cheek and the white part (conjunctiva) of her right eye. We realized that in the sun, these areas were not fully covered. Now we make sure Naomi has an umbrella, hat, sunglasses and gloves when we go out. We have learned that regular clothes does little to protect Naomi from the sun, so we are slowly changing her wardrobe to UV protective clothing. This clothing is designed to protect Naomi's skin from the sun's harmful UV rays. Dermatologist, Angela J Castellano, M.D. of Sherman Oaks has mapped out Naomi's body and will do this on an ongoing basis. So far Dr. Castellano has pointed out eight nevi that should be taken off. The mole that is on the white part of her right eye (Nevi of the Conjunctiva) is of concern. Dr. Castellano and Dr. Bresnick recommended ophthalmologist, Mark S. Borchert, M.D. of Childrens Hospital Los Angeles. Dr Borchert will be examining the nevi that are on her conjunctiva on January 7th, 2004.
In May Bob Niemack of LMNO Productions contacted us. He is the executive producer of "Super Surgery", a program he produces for the "Discovery Health Channel". He was interested in Naomi and her story. We knew with this opportunity her story would be shared with many more people. This opportunity should not be passed up. Julie and I agreed for LMNO Productions to film Naomi. They have filmed her at home, the doctor's office and in surgery. LMNO will be filming as Dr. Borchert examines her eyes and will get a follow up on her skin grafts. The program might be aired in March of 2004. We hope to have a website and trust fund for Naomi before "Super Surgery" airs.
Naomi will have a different life from many other children. Covered head-to-toe when she goes out into the sun, regular visits to the dermatologist and ophthalmologist, occasional surgeries to remove precancerous nevi will be part of her life, for the rest of her life. As Naomi learns and understands more with age, we pray that her sprit continues to be happy and filled with love.
As this year comes to an end, we would like to thank you for your faithfulness and keeping our family in your prayers. Thank you for sharing Naomi's story with your family, friends and coworkers. Because of you, Naomi has received the medical care she needs and with out you this would have been impossible. Hundreds of people, like you, have helped Naomi. We wish we were able to personally thank each and every one of you. Hopefully this summer we could have an event to do this and celebrate the incredible things that have happened in Naomi's life.