MOEBIUS HEROES WEEK CONTINUES

Again, sharing all the wonderful stories published online and in newspapers across the country and across the world, thanks to Moebius Syndrome Awareness Day.  Today--read about heroic Moebius mom Jamie Arnett and her young Moebius hero, her son Frank.  They live in Oklahoma.  They've had many obstacles to overcome; Frank has had many health problems.  But here's what I take from this piece--what Frank's mom said about her son.  What was it?

"We love him for who he is!"
Amen!  Read more about it:

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Friday a select group of people wore purple for Moebius Syndrome Awareness Day, hoping to shed some light on an extremely rare disorder that only one out of every 2 million people have.

Sapulpa’s 4-year-old Francis “Frank” Arnett is one of five children in the state of Oklahoma to have the syndrome.

“We finally saw a geneticist in Oklahoma City, who diagnosed him with a variation of Moebius Syndrome. We finally had a name for what was ailing our son,” said his mother Jamie Arnett.

Mobius Syndrome is a congenital neurological disorder which is defined by facial paralysis and the inability to move the eyes laterally.


Every individual has different symptoms, but most are born with complete facial paralysis resulting in not being able to close their eyes or form facial expressions.

Other symptoms that can occur with Mobius syndrome are:

• Limb abnormalities including clubbed feet, missing fingers or toes for example.

• Chest-wall abnormalities (Poland Syndrome)

• Crossed eyes (strabismus)

• Difficulty in breathing and swallowing.

• Corneal erosion resulting from difficulty in blinking.

Researchers have also discovered if the syndrome effects certain cranial nerves the individual could suffer from hearing loss.

Other difficulties that occur from the Syndrome include not being able to eat because of not being able to chew, babes can not breastfeed due to lack of suction muscles, dental problems due to loss of enamel and muscle degeneration, and eye problems such as cornea erosion and sleep disorders because of limited blinking.

“He has to wear tinted glasses because the sunlight can damage his eyes, and his eyes tend to cross because of the nerve damage. He has had extensive dental surgery because he was born without enamel on most of his teeth, and the others were malformed,” said Arnett.

The only medical treatment is just to work around the extreme difficulties of an individual suffering from the rare disorder.

• Feeding tubes can be used for the lack of an ability to consume foods.

• Physical, occupational, and speech therapy can improve speaking and motor skills that have been effected by Moebius.

• Constant eye drops and tinted glasses can be used to help to counter dry eyes or other ocular damage symptoms.

• Surgery can be used in some cases to fix things like cross eyes, another growing popular surgery for Moebius has been dubbed “smile surgery.” The surgery grafts muscles to the corner of the mouths to give the individual the ability to smile, but as of now does not help them form any other expressions.

Arnett said when Frank was born they did not know anything was wrong except that he failed the initial hearing test. For the first 15 months Arnett noticed Frank did not smile much or have any facial expressions, along with no desire to play with toys or stick them in his mouth.

Frank’s parents took him to the early intervention office at the Creek County Health Department in Sapulpa.

“They confirmed my worst fears, that my little boy was severely delayed, probably deaf, and needed testing in all areas immediately,” said Arnett.

After two years of therapy, being fitted for hearing aids, g-tube surgery Frank was diagnosed with a variation of Moebius.

Arnett said “life became much easier at that point” because they were able to connect with people on Facebook and through support groups of mothers of kids with Moebius.

“That was probably the best thing we ever did because some kids with Moebius Syndrome simply do not sleep, and it was nice to talk to other mothers about what worked for their little ‘Moebian,’” said Arnett.

Frank has to take a combination of three medication just to sleep 6-8 hours. Arnett said before the medicine he would sleep only 45 minutes at a time, and could literally stay awake for 72 hours at a time.

Arnett said Frank is unable to eat solid food and still uses a feeding tube, he can not feed himself, dress himself, talk properly or play with “big kid” toys.

“ We love him for who he is! he loves to be held, and rocked, and he loves “Baby Einstein videos and he really loves his baby toys. His favorite place to go is Walmart, because he loves picking out his diapers! he likes to ‘talk’ to the baby on the package. He has also participated in the Special Olympics Young Athletes Program and brought home his very first gold medal!”said Arnett.

Arnett is currently fund raising to raise $2,000 to help send her family to the Moebius Syndrom Association Conference in Bethesda, Md.

Moebius was discovered in 1888 by neurologist Paul Julius Moebius.

For more information you can view Mobius Syndrome Foundation Facebook page. For further information on Frank and his family’s life with Moebius or to aqquire on how to donate or help Frank visit the Facebook page “For the Love of Francis Henry.”

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