Kids with Facial Paralysis-Moebius Syndrome

The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.

This guide is designed to answer many of the questions parents ask about their child, it providesa better understanding of Moebius syndrome

Welcome to The Moebius Research Trust This Charity Trust has been set up for two main reasons: To raise

Why was my child born with Moebius syndrome?

Sign up for Facebook to join Moebius Syndrome Support Group.

Center for Facial Nerve Disorders

This Support group is set up to support families and adults with Moebius Syndrome and other related disabilities

This is a wonderful website. Follow Jennifers lilfe story so far!

Information about Moebius syndrome

Changing Faces is a UK charity that supports and represents people who have disfigurements of the face or body from any cause.

Tim has done a wonderful job with this website, it is a must see and a great read. Thank you for adding a link to our support group to your website.

TechPepsi tells about himself having Moebius Syndrome

Name: Joe Age: 34 I have a facial paralysis called Moebius Syndrome, Doctors say it's a rare disorder but, there are over two thousand cases of people with Moebius Syndrome worldwide. The majority people with moebius are children, however there are a few adults with moebius syndrome. Every two years there is a conference for people with Moebius Syndrome and their families. To find more information about Moebius Syndrome, or if your interested in going to the conference, please go to www.moebiussyndrome.com

I am trying to raise the awareness of Moebius Syndrome

Living with Moebius syndrome

Name: Dave Age: 33 I am a 33 year old man with a beautiful Fiance' and an adorable 19 month old son. I was born with Moebius syndrome. Which affected me with Cranial nerve damage "Facial Paralysis." as well as missing fingers on both hands, and I am missing all toes on one foot. I guess you could say that I am "physically disabled." I am a freelance artist and musician

By Will Dunham WASHINGTON (Reuters) - A newly developed surgical technique can help some people with facial paralysis regain muscle movement in their face, with some patients able to smile again within a week of surgery, researchers said on Monday

Throughout her life, Melody has been unable to smile, talk or eat most foods due to Moebius Syndrome, a rare birth defect caused by the absence or underdeveloped cranial nerves that control eye movement and facial expression. This has left nearly all of her facial muscles paralyzed, including the muscles in her eyes; Melody can only move her eyes up and down and must move her head to look to the side. In addition, Melody was born with a small jaw, club feet, and her thumb and index finger on her right hand grew together to form one finger

Dominque is getting her smile surgery done at the Hospital of Sick Children in Toronto, the cost is between $50,000 to $60,000 for the surgery and will be completed by Dr. Ronald M. Zuker. This article explains more about moebius syndrome and the smile surgery done by Dr Zuker,

Baxter, of Cambewarra, was born with a mask-like face as a result of moebius syndrome - abnormally developed cranial nerves.

Michael and Dawn Hazard with their daughter Paige, 13, who was born with a rare disorder called Moebius Syndrome.

Choosing a name for their second child was hard but they finally settled on the name Isaac, which means "he laughs" in Hebrew, and every parent wants their child to be a smiley, happy person. Ironic that choice was to be

Jake has Autism, Moebius syndrome and does not speak, he is also a maths genius

Evan, 5, has been through a lot in his young life. The youngster was born with a rare condition known as Moebius syndrome. It's a nerve condition that made the right side of Son's fight to smile earns Chelmsford family a trip to New Brunswick for Hockey Day in Canada Evan's face paralyzed. The condition didn't allow Evan to feed after being born and was diagnosed by a local doctor.

Hayley was born with moebius syndrome, leaving her without a left forearm, part of her fingers on her right hand and jaw joints. Friday's appeal aims to raise enough funds to provide the Ipswich Special School prep student with a wheelchair and a communicator

Jessica stands in a drab hallway, feet in a ballet pose, arms outstretched, face turned up. Long plastic tubes run from a ventilator to a trach in her neck, but she doesn

Kasey Wessel Balance was yet another challenge the Wessels

Jack Marshall is 11, he has Moebius syndrome. Jack participates in a fun run to raise money.

Named after Sir Alfred Poland, Poland's Syndrome is described as an absence or underdevelopment of the chest muscle (pectoralis) on one side of the body and webbing of the fingers (cutaneous syndactyly) of the hand on the same side (ipsilateral hand). Sometimes referred to as "Poland anomaly," it is a rare condition present at birth (congenital). For people born with Poland's Syndrome, the breastbone portion (sternal) of the pectoralis is also missing.

Yahoo support group

An organization made up of parents, relatives, caregivers, adults with PRS and professionals who have an interest in PRS.

This article provides information regarding effective treatments for Pierre Robin Sequence. For severe cases, jaw distraction provides a better set of outcomes

Laura Faye Clubok has a website tthat provides information, support, and suggestions for parents, relatives, and friends of children with hand anomalies. Laura is a registered and licensed occupational therapist (OTR/L), and a certified weight trainer who also has a congenital hand anomaly.

The Aussie Hand Foundation Inc - addresses the issue of hand difference, provides a forum for discussion for people with a hand difference, raises the awareness of hand differences in the community, provides a library of hand difference resource material, shares information with Australian families about hand difference, and provides support, understanding and encouragement to parents, children, teenagers and adults with a hand difference.

A cleft occurs when the lip and / or the palate fail to fuse during gestation:

Developmental dyspraxia is an impairment or immaturity of the organisation of movement. It is an immaturity in the way that the brain processes information, which results in messages not being properly or fully transmitted.

When a cleft lip is present, it may be difficult for the baby to make a good seal around the nipple. When a cleft palate is present, the mouth cannot be closed off from the nose and little or no suction can be created.

ORAL CARE FOR CHILDREN WITH MOEBIUS SYNDROME 1. Parents can modify oral hygiene techniques, depending on the child's age. For small infants, the gums need to be cleaned once or twice a day with a piece of clean gauze. This will help to establish a healthy oral environment for the baby teeth. Infants should be introduced to the toothbrush around the age of one. 2. Parents should not put children to sleep with a bottle containing any liquid other than water. Parents should encourage their infants to begin drinking from a cup around their first birthday. 3. Parents should help brush their children's teeth every day, after every meal. 4. Parents should not let their children drink fruit juice or sweetened drinks from a bottle or "tippy" cup, since this prolongs the exposure of teeth to harmful sugar. 5. Parents should provide healthy, balanced meals for children. They should limit the amount of sugar-laden foods and snacks in their diet. Plenty of healthy snacks should be available for children. Cheese products actually fight dental caries. 6. Parents can help make children's teeth more decay-resistant by using an ADA-approved children's toothpaste. Place only a pea-sized drop of toothpaste on the toothbrush. Until a child is 3 years old, parents should only use baby tooth cleanser - to avoid causing fluorosis discoloration of the adult teeth. 7. Children taking oral medications should have their teeth cleansed after each dose of medication. Nearly 100% of children's medications contain sucrose, which can increase the risk of developing dental caries. 8. Children should have their first oral/dental health evaluation by the age of 12 months, or within 6 months of the eruption of the first tooth. Printed with kind permission of Daniel Ravel, DDS

A Message from a Dentist and a Moebius Dad by Greg Osborne, DDS August 26, 1996

Muscle transplantation involves the removal of a segment of a muscle from the thigh with its blood supply and nerve supply. It is transplanted to the face where it is appropriately positioned, the blood supply is re-established through microvascular anastomoses and the muscle is given a new innervation by attaching the muscle's nerve to a nerve in the face. The muscle is positioned so that it will support the lower lip and facilitate mouth closure. In this way oral competence and tooth and gum protection are improved. When the muscle contracts it will lift the lower lip so that bilabial speech can be assisted. Also, and perhaps more importantly, when the muscle contracts it will elevate the corner of the mouth and upper lip and produce a smile.

Craniofacial Clinic Our Craniofacial Clinic provides complete care and treatment for children with all types of craniofacial disorders. This includes children with birth defects, deformity following trauma, or craniofacial growth disorders. Our team brings together health professionals from many different fields to ensure that patients and their families receive the best care. The team consists of plastic surgeons, dentists, ophthalmologists, anaesthetists, geneticists, orthodontists, photographers, orthotists (helmet remodelling), psychiatrists, social workers and specially trained nursing staff, both in theatre and the wards.

The Facial Paralysis Center in the Division of Plastic and Maxillofacial Surgery at Childrens Hospital Los Angeles addresses the specific problems of facial paralysis in children

During the past eight years, The Smile Foundation has become well known for bringing a smile to many previously disadvantaged South African children through their work of bringing professional people together to perform successful facial surgery. They help transform the lives of children who suffer with a cleft palate, Moebius Syndrome, facial burns and or any other facial anomalies. Read more;

Explains the smile surgery with before and after photos

Read more about Ryan's journey to smile.

The Invisible Smile: Living without facial expression

Each year, thousands of children are born with facial difference-abnormalities of the bones and tissues of the head and face that are present at birth or appear a few years later. Some conditions occur more commonly, such as cleft lip and cleft palate, while others, such as hemifacial microsomia, Treacher Collins, Apert, and Crouzon syndromes, are rarer. In addition to the emotional hardship of a different appearance and the attached stigma, some of these conditions pose special health concerns. A resource that parents can turn to for help is Children with Facial Difference, the first comprehensive book to provide parents with up-to-date information and support. Children with Facial Difference helps parents understand and cope with the challenges presented by their child's condition: Diagnosis; Causes and the genetic likelihood of recurrence; Emotional adjustment; Medical concerns and multi-disciplinary treatment approaches; Self-esteem; Family and community life; Speech, language, and hearing needs; Education; and Insurance issues, legal rights, and advocacy. Each chapter of Children with Facial Difference includes parent statements, reassuring and useful bits of information and insights from parents of children with facial difference. These statements help alleviate feelings of isolation and provide comfort and support. With a foreword by Joseph E. Murray, M.D., a Nobel Prize winner in medicine and a pioneer in craniofacial surgery, this book also includes a glossary of terms, a reading list, a resource list of organizations, and an index. Source: http://www.amazon.com/gp/product/0933149611/sr=1-1/qid=1234602420/ref=olp_product_details? ie=UTF8&me=&qid=1234602420&sr=1-1&seller=

Through early recognition, maternal-child nurses can offer anticipatory guidance and provide or recommend resources to parents of children with Moebius syndrome.

A collection of poems and stories from people with Bells Palsy and Facial palsy

Free Medical Dictionary A free online Medical Dictionary search engine for definitions of medical terminology, pharmaceutical drugs, healthcare equipment, health conditions, medical devices, specialty terms and medical abbreviations.

Strabismus is a vision condition where one

Fact Sheet about your baby's eye development

Sun glasses and hats for kids, including wrap around sunglasses

The National Welfare Rights Network (NWRN) provides free and independent information, advice and representation about Social Security law and its administration.

Described as the correction of an under-functioning central nervous system (CNS)

The Haberman bottle can be used for feeding babies with severe feeding problems such as Down's Syndrome, cleft lip/palate, Pierre Robin syndrome, neurological dysfunction, bronchopulmonary dysplasia, congenital heart disease, genetic disorders, sucking problems, excessive air intake during bottle feeding and oral and facial abnormalities.

Genetic & Community Support Group Links Page

Practical tips, information and resources to help make parenting a little easier

Information on parking concessions for people with mobility disabilities

Provides assistance to children, families and professionals information on clinical services, conferences, research forums and infomation sheets

The IDEAS' website provides information for people with disability, their families, carers and other supporters to access and search for information that promotes their independence.

Provides current and relvant information to individuals and family members affected by genetic conditions and the proffessonals who work with them

Royal Far West works in partnership with rural health professionals, other healthcare providers and specialist centres such as children

Disability First Stop is an innovative new service designed to assist people to get the help they need, when they need it, particularly in that difficult time after initial diagnosis. This new one-stop information and support service will help newly diagnosed people and their families cut through the disability service maze. Disability First Stop will provide: Information over the telephone, from email and face-to-face Access to web based information covering a broad range of contacts appropriate to the initial phase post diagnosis Supported referral to relevant services Assistance with individual planning Provision of professional advocacy support Linking to people who have similar personal experiences Provision of professional advocacy support Linking to people who have similar personal experiences Access to counseling Follow up assistance Access to interpreters The State

The Family Assistance Office has been set up by the Australian Government to give Australian families better access to government services. Instead of going to different agencies to get family assistance, families are able to get all their payments from just one place

Find out what your are entitled to. This page provides details of assistance provided by the Commonwealth Government related to Dental, ambulance services, patient transport assistance, eye care, community health centres, office of hearing services, health care advocacy and pharmaceutical benefits

The Department is responsible for income support, housing policy, community support, disability services, child care services and family issues, including family payments, child support and family relationships.

Autism Spectrum Disorder refers to a group of pervasive developmental disorders; diagnostic criteria include communication problems, ritualistic behaviours and inappropriate social interaction. Autism is a disorder of brain function that appears early in life, generally before the age of three. Children with autism have problems with social interaction, communication, imagination and behaviour.

Autism Aspergers Advocacy Australia (A4) is the national grassroots advocacy organisation for people with autism spectrum disorders including Asperger's syndrome and PDD-NOS

The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities, and Ear abnormalities and deafness. Those features are no longer used in making a diagnosis of CHARGE syndrome.

Acute facial paralysis that occurs in association with herpetic blisters of the skin of the ear canal, auricle, or both is referred to as the Ramsay Hunt syndrome, or herpes zoster oticus.

The CHARGE Syndrome Association of Australasia supports families in Australia and New Zealand to enable children and adults with CHARGE Syndrome to reach their full potential.

Velo-cardio-facial syndrome (VCFS), also known as Shprintzen Syndrome, and sometimes presenting as the DiGeorge Sequence, is known to be caused by a deletion of a small segment of the long arm of chromosome 22. It is one of the most common genetic disorders in humans. The following list shows the anomalies which have been found in VCFS.

Facioscapulohumeral Muscular Dystrophy (FSHD) is a disorder that causes weakness in the muscles of the face, scapula (shoulder blades), upper arm, lower leg, and hips.

Facioscapulohumeral Disease Facioscapulohumeral Muscular Dystrophy FSH Muscular Dystrophy

In Cayler Syndrome, one of the muscles (depressor anguli oris) that control the movement of lower lip is not fully developed (hypoplasia) or is absent (agenesis). When an affected child cries or smiles the muscle does not move appropriately because half of the lower lip cannot be drawn down and outward.Infants with Cayler Syndrome also experience cardiac defects.

Key Words Moebius syndrome - Poland syndrome - Hypergonadotropic, Hypogonadism...

Overview of Facial Paralysis