Video Rating: 4 / 5

Flagler Beach, FL (PRWEB) May 08, 2012

The doctor walked into the examination room and said to the anxious parents waiting inside: ?I?m sorry to tell you, your baby suffers from an incurable genetic disorder called Cri du Chat Syndrome. She will never walk or talk. She may have a very short life and you should consider institutionalizing her.?

For the child?s parents, it was like time stood still. They looked at each other, terrified about what may become of their precious little girl and started to panic about what they would do next.

Unfortunately, the doctor, who relied on outdated information from 30 years ago, greatly exasperated one of the most difficult pieces of information these young parents may ever receive in their lifetimes.

?For many parents whose children are diagnosed with Cri du Chat, this is exactly what they have experienced,? says Stephen Furnari, 40, a resident of Flagler Beach, Florida and father to Katie, a three year old with the syndrome. ?But, it doesn?t have to be that way.?

Furnari hopes to change this. As part of International Cri du Chat Awareness Week which starts on May 13, 2012, Furnari is working with Flagler Hospital in Florida and WESTMED Medical Group in New York, to spread current information about Cri du Chat to healthcare providers.

Cri du Chat (also called 5p- Syndrome) is a rare genetic disorder caused by a deletion in the ?P? region of the fifth chromosome. French for ?cry of the cat,? the syndrome is named for the distinctive kitten-like sound that infants affected by the syndrome make when they cry.

The syndrome affects approximately one in every 50,000 newborns, making it quite rare. Even in densely populated metropolitan areas like New York, Miami or Los Angeles, it?s not uncommon for medical professionals to have never seen a case or even be aware the syndrome exists.

According to Furnari, Cri du Chat frequently goes undiagnosed. ?You have children suffering from unexplained health issues and developmental delays, often for prolonged periods of time. It?s incredibly frustrating for parents who want the best care for their child,? he said.

This is particularly so in cases like Furnari?s where there was a normal pregnancy and the baby was born with no life threatening medical problems. Mr. Furnari?s daughter Katie had a few of minor issues when she was born, including a small skin tag, low muscle tone and a heart murmur. Independently, none of these things were cause for concern.

?In retrospect, there were enough signs,? said Furnari. ?In particular, Katie?s kitten-like cry. Any medical professional armed with the most basic information about the syndrome should have noticed and recommended genetic screening.?

Furnari?s daughter was not diagnosed until she was three months old. It was Dr. Barbara Coven, a pediatrician with WESTMED Medical Group, a Purchase, New York-based group medical practice, who pieced together the clues that none of the other doctors caring for Katie could. ?Dr. Coven happened to see one case thirty years ago,? says Furnari. ?We were very lucky, we know other families whose children went undiagnosed for more than three years.?

The other problem is that once the syndrome is diagnosed, some medical professionals are relying on outdated information about the syndrome. ?You would be surprised at how many doctors are still distributing incorrect information from the 1970s, a time when most children with the syndrome were institutionalized.?

Now, with the help of early intervention programs, including speech, occupational and physical therapies, children with Cri du Chat live with their parents and are expected to live healthy, normal lifespans.

Furnari is a member of the 5p- Society, the U.S. based support group for parents and caretakers of family members with Cri du Chat. Starting on May 13, 2012, the 5p- Society is sponsoring the first annual International Cri du Chat Awareness Week, together with other Cri du Chat support groups from around the world.

?Our goal is to share the most up-to-date diagnosis and care information about the syndrome to as many healthcare professionals as possible. We particularly want to reach pediatricians, OBGYN doctors and maternity ward nurses who are the first line of defense when it comes to diagnosis,? said Furnari.

?Katie is doing great,? beamed the proud dad. ?With the help of the therapies she receives in the ESL program at her elementary school, Katie is very close to walking independently and her vocabulary of words and ASL signs continues to grow each day. Her mom and I couldn?t be happier.?

About The 5p- Society and International Cri Du Chat Awareness Week

The 5p- Society (five p minus) is the support group for families and caretakers of children affected by Cri du Chat Syndrome (also known as 5p- Syndrome or Cat Cry Syndrome) and a co-sponsor of the First Annual International Cri du Chat Awareness Week. The Society encourages and facilitates communication throughout the Cru du Chat community and spreads awareness and education about the syndrome and treatment best practices for those affected by Cri du Chat Syndrome.

For more information about International Cri du Chat Awareness Week, including information for medical professionals about diagnosis and treatment of the syndrome, visit http://www.fivepminus.org.

Find More Early Signs Of Pregnancy Press Releases

Question by rosaheide: Is it true that taking folic acid during pregnancy can actually harm the baby?
I heard that taking multivitamins while pregnant, specially the folic acid in them, is what makes babies and kids have all the allergies they have these days.

I’m pregnant with my third baby, and I’ve taken the multivitamins with my other two kids, just like the doctors always prescribe, but… they have very very bad skin allergies and also the more normal seasonal allergies too.

Just wondering if anybody had heard of this theory… thanx!

Best answer:

Answer by Invisible Pink RN
I’ve never heard of Folic Acid being harmful – only helpful at preventing neural tube defects!

What do you think? Answer below!

Video Rating: 4 / 5

Video Rating: 4 / 5

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Los Angeles, CA (PRWEB) February 06, 2012

Sevenly announces today that its next campaign, which runs February 6-12, will raise funds for Relief International to help provide nutritious meals for malnourished children in Darfur, Sudan.

Relief International is a humanitarian non-profit agency dedicated to reducing human suffering. They provide emergency relief, rehabilitation, development assistance and program services to vulnerable communities worldwide. Sevenly is focusing their support with Relief International in Darfur because it is one of the hardest hit provinces in Sudan.

?The pictures and videos broadcasting the drought in Darfur are gut-wrenching,? said Brett Skinner, Sevenly Campaign Manager. ?Sevenly is 100% behind supporting the efforts of Relief International to reduce the Child Mortality rate in Sudan through their therapeutic feeding centers. This is the 21st century; NO child should die of hunger of malnutrition.?

Relief International operates two therapeutic feeding centers in Darfur to provide emergency nutrition support to the most vulnerable populations ? children under five and pregnant women ? via food rations, growth monitoring and nutrition education for caretakers and sufferers of malnutrition.

Sevenly puts each charity it supports into one of seven different cause categories. The campaign for Relief International will be the third campaign in the Disaster category since the company was launched. Each $ 22 t-shirt purchased will provide thirty five nutritious meals to a malnourished child in Darfur. Since June 2011 Sevenly has donated over $ 225,000 to some of the world?s greatest causes.

About Sevenly

Sevenly is a co-profit company founded in June 2011 to raise capital and awareness for the world?s greatest causes. Each week Sevenly partners with one qualified nonprofit to sell a shirt specifically designed for that week?s campaign, with seven dollars from each shirt sale going to the charity. Run by CEO Dale Partridge, the company?s goal is to provide support to charities through increased awareness, funding and following. To learn more about Sevenly visit http://www.Sevenly.org.

About Relief International

Relief International is a humanitarian non-profit agency that provides emergency relief, rehabilitation, development assistance, and program services to vulnerable communities worldwide. Relief International is solely dedicated to reducing human suffering and is non-political and non-sectarian in its mission. For more information, visit http://www.ri.org.

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