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Wednesday, November 29, 2017

Lucy's Story: Treacher Collins Syndrome


Lucy has never allowed her #craniofacial condition to hold her back. “It has made me more determined. It is my way of proving that I may look unusual, but that isn’t going to get in my way. I get on with what I want to do.” Next summer, Lucy will graduate in management and marketing and, after a year’s placement at Disney’s London office, she is excited about beginning her career.

http://bit.ly/2j1DHuc



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Tuesday, November 28, 2017

Anni, Treacher Collins Syndrome - Choose to Be Kind


Anniston (Anni) was born to parents Derek and Beth Sanders, and was diagnosed with Treacher Collins Syndrome. She has undergone eight surgeries, most recently being a jaw distraction surgery, which was the most invasive and difficult surgery yet.

Anni was born with a small, recessed jaw, which makes it difficult for her to eat certain foods. Having a recessed jaw also resulted in Anni having severe sleep apnea and put her at risk for choking easily. The surgery involved placing two distractors, which are like metal rods, on each side of her jaw. http://bit.ly/2AfNx35

“Teach your children and grandchildren that everyone is different, and that it’s OK to be different,” Beth Sanders said. “When given the choice between being right and being kind, choose kind.”

Follow Anni’s journey on her Facebook page “Anniston Claire’s Journey.”




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Scott Guzzo Has Crane-Heise Syndrome, a Rare Craniofacial Condition


I've spent time with the Guzzo family at the Annual CCA Retreat! Scottie has Crane-Heise syndrome, a #craniofacial condition. The syndrome is so rare, as far as the family knows, Scott may be the only person in the world right now with it. Scottie lives every day to the fullest, and he loves everyone. His energy is remarkable and enjoyably infectious.

The Guzzo's are amazing people who continue to make a profound difference in the craniofacial community and beyond. I'm so thankful to have met this amazing family. 💗 http://bit.ly/2AEXBpf



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Monday, November 27, 2017

Local 21-year-old relates to movie 'Wonder'.


Aguilar has #Goldenhar syndrome, a congenital #craniofacial condition that affects development of his face. In most cases, as in Aguilar’s, only one side of the face is affected. His most recent surgery was in March of this year. He received prosthetic jaw joints. Aguilar, 21, graduated from Thurston High School and now has his driver’s license. http://bit.ly/2AfuN3A



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Muskegon Girl with Pfeiffer Syndrome Is Making a Difference






Nine-year-old Avery Cooper was born with Pfeiffer Syndromean #craniofacial condition that makes her look different than other kids, "At first people would ask me why my eyes look bigger and I said because my face it kind of like flat in the middle. And they didn't really say anything they just wanted to know why." 

Avery has had nearly 18 surgeries. Part of her attempt at being normal is to remove the stigma of #Pfeiffer Syndrome. http://on.ksdk.com/2AA6wbn         



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Sunday, November 26, 2017

Kids with craniofacial conditions hope film 'Wonder' will nurture awareness in others


Yates, of East Garfield Park, was born with a particularly severe case of Treacher Collins Syndrome, a #craniofacial disorder, which rendered him unable to open his mouth more than a sliver until two rounds of intense surgery in the last year at Rush University Medical Center. Since then, the Young Magnet High School senior has eaten food for the first time after subsisting on the meal replacement drink Ensure for much of his life. He is able to breathe better and is learning to speak more clearly.

http://www.chicagotribune.com/news/local/ct-met-wonder-facial-conditions-20171115-story.html



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Saturday, November 25, 2017

Dear Special-Needs Parents: We're Being Duped by a Faulty Healthcare System

Cynthia Murphy | Craniofacial-Vegan Activist |

Cynthia Murphy (Treacher Collins) and Sophie (Pfeiffer Syndrome)

Have you noticed the increase of chronic illness among children and adults with disabilities? I’ve seen countless families torn apart and derailed after being left on the trail of devastation. Sadly, many of these grief-stricken people have been affected to such a degree, all ties have been broken, and now their children are no longer with us.

It’s heartbreaking to bear witness to these parents trying to cope with the death of a child while longing for what should have been. A parent’s worst fear is outliving their children. It’s even especially painful for these families living with immense regret and guilt that they didn’t do enough.
We are often left to suffer health disparities due to craniofacial anomalies, a rare genetic disease that causes severe internal and external bodily malformations. Chronic illnesses are inevitable.
The reality is that we’ve been deceived and failed by many of our own specialist doctors within a misleading healthcare system.
I first noticed the staggering increase of child craniofacial-related deaths last year while assisting Dr. Justine Lee of UCLA to gather participants for a study involving a rare genetic craniofacial condition known as Saethre-Chotzen Syndrome.

I increased my networking efforts by joining hundreds of groups and amassed my friends list to nearly three thousand. I’ve had personal conversations with almost everyone, and I don’t add friends I can’t verify. However, I’ve learned the tragic challenges that many of these shattered families face.

R.I.P. Kip Ryder (Saethre-Chotzen Syndrome

Every day when I open my Facebook, generally the first thing I see is a child suffering from chronic disease attributed to their craniofacial disorder. In moments of apprehension and fear, parents often post their experiences, including graphic images. They reach out in hopes of securing guidance from other parents who’ve endured the same experience.

Many parents are aware of the hundreds of craniofacial support groups available, and so they utilize them to help answer questions that their doctors won’t.

Mother Beverley Harry admits that a nutritional diet led the way to excellent health for her nine-year-old daughter, Becca, who was born with a rare form of Crouzon’s Syndrome. “It’s been a journey fighting doctors for information about nutrition because it goes against their practice and they aren’t knowledgeable on the subject,” she says. “I chose to take control of my child’s health and ditched doctor care, and I only utilize our medical doctor when needed for surgeries, etc.”

Beverley affirms that it’s our responsibility to look after our children’s health. She’s had numerous doctors misinform her and prescribe ineffective and even harmful medications. Things have dramatically improved since changing her daughter’s diet including the use of pure colloidal silver, a miraculous naturopathic mineral healing agent.
Becca now no longer needs physio or occupational therapy as she’s gained tremendous strength, and all development delays have significantly improved.
I was born with Treacher Collins Syndrome, and I’ve also been a victim of this flawed healthcare system. October 2015, I nearly died in the Utah Mountains landing myself in the Salt Lake City Hospital for a week. I was found blue and foaming at the mouth, and after the incident, my oxygen levels dropped to the low sixties during my sleep. Doctors couldn’t figure out what was wrong, so I was discharged with a severe sleep apnea diagnosis.

I’m awaiting a second major jaw reconstruction surgery due to severely restricted airways and because the first one was unsuccessful. I was informed that the first jaw surgery failed because I was too young and undeveloped at age nineteen.


One year following my near-death experience I became plagued with several chronic illnesses including eye infections, acute infectious sinusitis, digestive issues, enlarged spleen, oozing Baha infections, headaches, constipation, hemorrhoids, chronic fatigue, and progressive periodontal disease. Also, I have four braces, for my wrists and knees due to advanced arthritis and problematic muscle and ligament pain involving cracking and popping joints.

One of the most significant challenges I’ve overcome is suffering from four to six monthly chronic bladder and yeast infections. At one point, I was on my menstrual period for nearly two months.
That is when I discovered that prescription drugs are incredibly detrimental to the body.
These pills are not natural earth substances. They are harmful man-made compounds that are far from curing illness. The acclaimed documentaries American Addict reveal the pharmaceutical trade and how many Americans are being affected today.

Last year I made a choice to walk away from all prescription drugs, and my husband and I decided to adopt herbalism and organic vegan diets. Both of us endured different illnesses. My husband, a disabled USMC veteran and PTSD sufferer, was diagnosed obese and pre-diabetic, and I was taking more than fourteen prescription drugs for numerous ailments including depression. Nothing worked, and I felt so sick that I couldn’t function. I relied on narcotics for pain and anxiety. For years, I had been questioning why every prescription gave me more problems. One medication regularly led to three more.

I’ve accumulated so many pills over the years that I could submerge my entire body with them, literally.

I felt my body failing and my mentality slipping while being trapped in a clout of destructive thoughts. I was even headed towards a hysterectomy at age thirty-one, because of birth control pills I’d taken for over fifteen years.

The quality of my life has vastly improved since I’ve discontinued taking medication.
I’m here to tell you that we live in a sick care system that is devised as a complex maze that has us clambering out to referred specialists who can’t answer our questions. They deny nutrition and instead use the power of their pen.
This process leaves us feeling exhausted, especially when the costs associated with taking time off work and traveling far distances drain our bank accounts.

Many of us are startlingly aware of the health epidemic taking over our country, and it’s not just the craniofacial community either. It’s America. Our country is ranked as having the lowest food qualities in the world. There are toxic chemicals and GMOs allowed in our foods that other countries don’t allow.

This particularly affects us in the craniofacial realm because naturally our bodies are more sensitive. However, make no mistake, the ongoing sick-care epidemic is affecting everyone everywhere.
Evidence of this has been documented in the groundbreaking films What the Health, Forks Over Knives, and Hungry for Change, all available on Netflix.

Please take some time to educate yourself on holistic health practices and organic veganism for the sake of discovering complete wellness for you and your children. We deserve better than this, and it’s during these times we need to support each other the most.

In addition to my advocacy for craniofacial differences, my husband, Thane, and I built a charitable reference and recipe app named Assuaged to help guide families find safe foods and products to buy. We founded Assuaged on the concept of the Blue Zone movement and in the region of Loma Linda, California—one of only five geographical areas in the world and the only one in the United States.
Research studies and several news reports have established that blue zone residents maintain supreme health and live past the age of one hundred.
We are passionately seeking to bridge the gap between healthcare and self-care to meet the needs of healthy living as a method for longevity. We’re going beyond charity and unifying people through love and compassion.
Assuaged is now available to download for FREE via iOS.
Cynthia Today at Optimal Health | The Murphys Happily Married 11+ Yrs | Thane, USMC 2004

Thursday, November 23, 2017

Apply for Craniofacial Cochlear Baha Giveaway

We've received several entries and have read some very troubling stories, involving children under the age of seven, living without the ability to hear and comprehend. Reading these harsh realities has been heartbreaking and absolutely mind-blowing. 
While we only have one device to giveaway, ALL of your stories matter to us. We will be sending copies of every email to Cochlear directly and to various lawmakers - including a California Congressman. Our voices and people of influence can enact the positive changes needed.  ðŸ’™
Please apply if you're in need of a Cochlear Baha hearing aid. http://bit.ly/2zcN5Bi

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Wednesday, November 22, 2017

Meet Nathaniel, a brave boy with Treacher Collins Syndrome


A remarkable story of hardships and triumphs! After nearly 60 surgeries, the Newmans met with surgeons at Seattle Children's Hospital and made the difficult decision to have their son Nathaniel undergo a radical surgery that had only been performed on one other child with Treacher Collins Syndrome. He was 12 years old, and the goal of the surgery was to be able to open up Nathaniel’s airway enough to finally remove his trach.

Over the years, the Newman family has worked with two non-profit organizations, myFace and Children's Craniofacial Association, both offer support to patients with facial differences and their families. as well as raise awareness about these conditions.

Watch Video and Read Full Story

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Macy Does not Allow Goldenhar Syndrome to Control Her Life


Macy Acord has suffered from Goldenhar Syndrome since birth but she and her mom want people to know that she’s just like every other teenage girl. She does not allow her craniofacial disorder to control her life. http://bit.ly/2jfDZwV

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Saturday, November 18, 2017

Healthy Plant-Based Vegan Multi-Vitamin

If you deal with chronic illness or have a #craniofacial disorder we recommend organic veganism. If you're concerned about nutrient deficiencies on a #plantbased diet, no worries. We've got you covered with one of our Assuaged product recommendations by Garden of Life! mykind Organics is a daily complete #vegan multivitamin formula for individuals of all ages, each with its own unique ingredients. | Assuaged

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Garden of Life MyKind Brand

Thursday, November 9, 2017

Kiri Schroeter has Undergone 40+ Craniofacial Surgeries


Kiri Schroeter prompted South Australians to come together and admire the work of leading #craniofacial surgeon David David.

Kiri's story is an amazing triumph over circumstances and possibly even tragedy. He was abandoned at a Cambodian orphanage as a nine-month-old and left in a shoebox without feet and hands, and with facial deformities, Kiri was adopted by a wonderful Barossa Valley family. Read full article HERE.

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Friday, November 3, 2017

Dorsey Ross and Apert Syndrome


Dorsey Ross was born with a disorder called Apert Syndrome, a #craniofacial condition that affects the hands and face. When he was born his forehead was pushed outward his eyes and nose were pushed back into his head. His fingers and toes were fused together meaning Dorsey had no movement of them. He has been through 68 operations over his lifetime, told he would not make it in this world by doctors.

Dorsey Ross Is The Definition of Overcomer 

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Thursday, November 2, 2017

Craniofacial Conditions and Chronic Illness


Wow, we've been receiving many applications for the Cochlear Baha hearing aid giveaway. Please apply if you have a #craniofacial condition and are in need! You can submit an entry following the link at the end of my new article. 💜
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If you have a chance, please do read it. I've included significant health information backed by personal experiences, interviews, medical studies and movie documentaries.