PATIENT PROFILE: MIRACLE MAY (PART 1 OF 2)

There is a saying that if you change how you perceive miracles, you’ll find them happening all around you every day! Moebius Syndrome truly showed me that I AM A MIRACLE to others! My name is Miracle May. I am 24 years old, and I was born with Moebius Syndrome – this is my story!




Before I begin though, I’d like to share an overview of exactly what Moebius Syndrome is and how it can be treated (Source - Johns Hopkins Medicine):


Moebius syndrome is a type of congenital facial paralysis. This condition usually affects both sides of the face and whilst researchers have not identified the cause(s), studies seem to suggest a combination of genetic and environmental risk factors.


People with Moebius syndrome experience:

· Weakness or complete paralysis of the facial muscles

· Trouble swallowing or sucking

· Difficulties with speech and frequent drooling

· Inability to form facial expressions, including smiling, frowning, raising eyebrows, puckering lips or closing eyes

· Cleft palate

· Dental problems

· Hand and foot problems including club foot and missing or fused fingers (syndactyly)

· Hearing problems

· High palate

· Irritated and dry eyes

· Motor delays

· Poland’s syndrome (chest wall and upper limb anomalies)

· Strabismus (crossed eyes)


Moebius Syndrome Treatment

Due to the extent of the symptoms of Moebius syndrome, treatment may require a team of doctors as opposed to a single specialist. This medical team would likely include neurologists, ophthalmologists, plastic surgeons, otolaryngologists and speech pathologists.


Moebius syndrome can impact the cranial nerves which are responsible for control of muscles in the tongue, jaw, larynx and throat, as well as those that produce speech. As a result, children with Moebius syndrome often struggle with proper articulation and resonance. In severe cases of Moebius syndrome, feeding may require a special bottle or feeding tube to help the child receive optimal nutrition. However, feeding difficulties tend to improve with age as children develop better motor control. Physical and speech therapy can help children gain greater control of their speaking and eating, as well as improve overall coordination and motor skills.


CONTINUE TO PART 2

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