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Toddler with rare skin condition heads to Russia

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Toddler with rare skin condition heads to Russia

Toddler with rare skin condition heads to Russia

An American toddler battling a rare skin condition that makes her look like a superhero is heading to Russia for treatment, after hitting international headlines earlier this year.

Tomorrow, [Tuesday Sept 24, 2019] six-month-old Luna will head to Krasnodar in southern Russia with her mother Carol Fenner, 35, of South Florida, USA, to gain medical attention that could change her life.

"They have technology there that isn't available in the US yet, in the US it would take four years for Luna to be treated, but in Russia I'm told it will be 18 months," said Carol, a full-time mom.

"The doctors in the US kept giving me different advice, I felt so lost, and didn't know what to do.

"Everybody thinks I'm crazy to go to Russia but I have done a lot of research and gained advice from several doctors and I really think that this is the best option for Luna right now." Six days after Luna was born in March 2019 she was diagnosed with Giant Congenital Melanocytic Nevus (GCMN), a condition which appears in roughly one in every 20,000 newborns worldwide, according to the U.S. National Library of Medicine.

Carol said: "I was in complete shock.

"When Luna was first born nobody in the room knew what the condition was.

"My last ultrasound before the birth had revealed nothing abnormal.

"Then a doctor came up to me and said 'be prepared for cancer.'

"It was awful." MRIs revealed good news - cancer was not detected, but Carol was told by doctors that the condition could evolve into cancer in the future.

The worried mom began desperately searching for surgeons who could perform operations to help her daughter's condition.

Carol said: "A surgeon in Boston all told me that Luna must be subjected to over 100 sessions of laser treatments.

"I didn't feel comfortable with that, I wanted her to start school at the right time and feel like she could fit in with the other kids.

"Other surgeons in New York, Chicago and Florida told me that laser would be the worst thing for Luna.

They all had very different opinions about what to do and when." Just as Carol was losing hope a new message arrived from across the world.

She received a message An American toddler battling a rare skin condition that makes her look like a superhero is heading to Russia for treatment, after hitting international headlines earlier this year.

Tomorrow, [Tuesday Sept 24, 2019] six-month-old Luna will head to Krasnodar in southern Russia with her mother Carol Fenner, 35, of South Florida, USA, to gain medical attention that could change her life.

"They have technology there that isn't available in the US yet, in the US it would take four years for Luna to be treated, but in Russia I'm told it will be 18 months," said Carol, a full-time mom.

"The doctors in the US kept giving me different advice, I felt so lost, and didn't know what to do.

"Everybody thinks I'm crazy to go to Russia but I have done a lot of research and gained advice from several doctors and I really think that this is the best option for Luna right now." Six days after Luna was born in March 2019 she was diagnosed with Giant Congenital Melanocytic Nevus (GCMN), a condition which appears in roughly one in every 20,000 newborns worldwide, according to the U.S. National Library of Medicine.

Carol said: "I was in complete shock.

"When Luna was first born nobody in the room knew what the condition was.

"My last ultrasound before the birth had revealed nothing abnormal.

"Then a doctor came up to me and said 'be prepared for cancer.'

"It was awful." MRIs revealed good news - cancer was not detected, but Carol was told by doctors that the condition could evolve into cancer in the future.

The worried mom began desperately searching for surgeons who could perform operations to help her daughter's condition.

Carol said: "A surgeon in Boston all told me that Luna must be subjected to over 100 sessions of laser treatments.

"I didn't feel comfortable with that, I wanted her to start school at the right time and feel like she could fit in with the other kids.

"Other surgeons in New York, Chicago and Florida told me that laser would be the worst thing for Luna.

They all had very different opinions about what to do and when." Just as Carol was losing hope a new message arrived from across the world.

She received a message from the office of surgeon-oncologist Pavel Borisovich Popov, MD, PhD of laserterapy.ru.

Carol said: "He had seen Luna's case in a Russian newspaper and he said he had some options for Luna that weren't available in the USA yet.

After discussions with Dr. Popov, Carol and her husband, Thiago Tavares, 32, who works in construction, decided that they would give it a try.

Carol said: "They will check her and do some exams." "Dr. Popov agreed for me to meet some parents of patients who have done it before." "My husband will stay here to pay for bills and everything." If her initial tests go to plan then Luna will receive six to eight surgeries over the course of 18 months, with each procedure costing around $25,000 USD - a total of $150,000.

Carol said: "It's been very difficult for us to raise the money.

"We still have a long way to go." Amid all the uncertainty regarding Luna's condition Carol says she hasn't taken time to process what is about to happen.

She said: "I haven't stopped to think about it yet.

I think I am probably going to freak out when we get to the airplane." "It will be a huge relief if it works for Luna." Carol says that besides her unusual skin condition Luna is just like any other six-month-old child.

"She just learned how to jump and she giggles all the time, she's very calm, she doesn't cry often.

"I want to finish the surgeries before she heads to school.

"I don't want her to get bullied.

People ask if it's contagious and say really mean things.

"One time we were at church, and a girl sitting next to us said to her mother, 'Wow, look at her.

What a monster.'" On Facebook and other social media platforms, Carol has received countless insensitive comments towards her and Luna.

She said: "There are a lot of racist comments.

A lot of people get so angry." "At the beginning, I wanted to kill everybody.

Now, I answer with the education I have regarding the condition.

But sometimes I still get mad.

"I also receive a lot of encouragement and people who tell me Luna is beautiful.

When people say that she looks like the Batman superhero or a butterfly that makes me happy." Carol hopes that after the surgeries she can be a source of encouragement for her daughter as she grows up.

"I will teach her how to deal with some bad comments and bad people.

She is really strong.

I need to prepare her." While Carol hopes to tutor Luna for her life ahead, Luna is teaching her mother some lessons as well.

"I am a better person now.

She's stronger than me.

I learn from her." "She is the happiest baby I've seen in my life.

That's what makes me so relieved." There is a GoFundMe page to help cover the expenses for Luna's surgeries https://www.gofundme.com/f/fpxnw-help-luna

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Toddler with rare skin condition heads to Russia

An American toddler battling a rare skin condition that makes her look like a superhero is heading to Russia for treatment, after hitting international headlines earlier this year.

Tomorrow, [Tuesday Sept 24, 2019] six-month-old Luna will head to Krasnodar in southern Russia with her mother Carol Fenner, 35, of South Florida, USA, to gain medical attention that could change her life.

"They have technology there that isn't available in the US yet, in the US it would take four years for Luna to be treated, but in Russia I'm told it will be 18 months," said Carol, a full-time mom.

"The doctors in the US kept giving me different advice, I felt so lost, and didn't know what to do.

"Everybody thinks I'm crazy to go to Russia but I have done a lot of research and gained advice from several doctors and I really think that this is the best option for Luna right now." Six days after Luna was born in March 2019 she was diagnosed with Giant Congenital Melanocytic Nevus (GCMN), a condition which appears in roughly one in every 20,000 newborns worldwide, according to the U.S. National Library of Medicine.

Carol said: "I was in complete shock.

"When Luna was first born nobody in the room knew what the condition was.

"My last ultrasound before the birth had revealed nothing abnormal.

"Then a doctor came up to me and said 'be prepared for cancer.'

"It was awful." MRIs revealed good news - cancer was not detected, but Carol was told by doctors that the condition could evolve into cancer in the future.

The worried mom began desperately searching for surgeons who could perform operations to help her daughter's condition.

Carol said: "A surgeon in Boston all told me that Luna must be subjected to over 100 sessions of laser treatments.

"I didn't feel comfortable with that, I wanted her to start school at the right time and feel like she could fit in with the other kids.

"Other surgeons in New York, Chicago and Florida told me that laser would be the worst thing for Luna.

They all had very different opinions about what to do and when." Just as Carol was losing hope a new message arrived from across the world.

She received a message An American toddler battling a rare skin condition that makes her look like a superhero is heading to Russia for treatment, after hitting international headlines earlier this year.

Tomorrow, [Tuesday Sept 24, 2019] six-month-old Luna will head to Krasnodar in southern Russia with her mother Carol Fenner, 35, of South Florida, USA, to gain medical attention that could change her life.

"They have technology there that isn't available in the US yet, in the US it would take four years for Luna to be treated, but in Russia I'm told it will be 18 months," said Carol, a full-time mom.

"The doctors in the US kept giving me different advice, I felt so lost, and didn't know what to do.

"Everybody thinks I'm crazy to go to Russia but I have done a lot of research and gained advice from several doctors and I really think that this is the best option for Luna right now." Six days after Luna was born in March 2019 she was diagnosed with Giant Congenital Melanocytic Nevus (GCMN), a condition which appears in roughly one in every 20,000 newborns worldwide, according to the U.S. National Library of Medicine.

Carol said: "I was in complete shock.

"When Luna was first born nobody in the room knew what the condition was.

"My last ultrasound before the birth had revealed nothing abnormal.

"Then a doctor came up to me and said 'be prepared for cancer.'

"It was awful." MRIs revealed good news - cancer was not detected, but Carol was told by doctors that the condition could evolve into cancer in the future.

The worried mom began desperately searching for surgeons who could perform operations to help her daughter's condition.

Carol said: "A surgeon in Boston all told me that Luna must be subjected to over 100 sessions of laser treatments.

"I didn't feel comfortable with that, I wanted her to start school at the right time and feel like she could fit in with the other kids.

"Other surgeons in New York, Chicago and Florida told me that laser would be the worst thing for Luna.

They all had very different opinions about what to do and when." Just as Carol was losing hope a new message arrived from across the world.

She received a message from the office of surgeon-oncologist Pavel Borisovich Popov, MD, PhD of laserterapy.ru.

Carol said: "He had seen Luna's case in a Russian newspaper and he said he had some options for Luna that weren't available in the USA yet.

After discussions with Dr. Popov, Carol and her husband, Thiago Tavares, 32, who works in construction, decided that they would give it a try.

Carol said: "They will check her and do some exams." "Dr. Popov agreed for me to meet some parents of patients who have done it before." "My husband will stay here to pay for bills and everything." If her initial tests go to plan then Luna will receive six to eight surgeries over the course of 18 months, with each procedure costing around $25,000 USD - a total of $150,000.

Carol said: "It's been very difficult for us to raise the money.

"We still have a long way to go." Amid all the uncertainty regarding Luna's condition Carol says she hasn't taken time to process what is about to happen.

She said: "I haven't stopped to think about it yet.

I think I am probably going to freak out when we get to the airplane." "It will be a huge relief if it works for Luna." Carol says that besides her unusual skin condition Luna is just like any other six-month-old child.

"She just learned how to jump and she giggles all the time, she's very calm, she doesn't cry often.

"I want to finish the surgeries before she heads to school.

"I don't want her to get bullied.

People ask if it's contagious and say really mean things.

"One time we were at church, and a girl sitting next to us said to her mother, 'Wow, look at her.

What a monster.'" On Facebook and other social media platforms, Carol has received countless insensitive comments towards her and Luna.

She said: "There are a lot of racist comments.

A lot of people get so angry." "At the beginning, I wanted to kill everybody.

Now, I answer with the education I have regarding the condition.

But sometimes I still get mad.

"I also receive a lot of encouragement and people who tell me Luna is beautiful.

When people say that she looks like the Batman superhero or a butterfly that makes me happy." Carol hopes that after the surgeries she can be a source of encouragement for her daughter as she grows up.

"I will teach her how to deal with some bad comments and bad people.

She is really strong.

I need to prepare her." While Carol hopes to tutor Luna for her life ahead, Luna is teaching her mother some lessons as well.

"I am a better person now.

She's stronger than me.

I learn from her." "She is the happiest baby I've seen in my life.

That's what makes me so relieved." There is a GoFundMe page to help cover the expenses for Luna's surgeries https://www.gofundme.com/f/fpxnw-help-luna




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