Sources: NorthJersey.com, Moebius Syndrome.Info
The Nutley NJ Board of Commissioners celebrated Moebius Syndrome Awareness Day by honoring Lincoln School fourth-grader Willem Wuebben, who is diagnosed with the genetic condition. It is characterized by facial paralysis, visual impairments, sensory integration dysfunctions, sleep disorders and weak muscle tone.
His mother Leslie Wuebben writes: “Willem was born July 12, 2005…I was confused that I could not get him to nurse…(O)ur pediatrician didn’t like his cry, that he was “floppy,” didn’t seem to be able to suck, that his face didn’t move when he sneezed…(His) MRI came back normal and we were sent home with a feeder bottle and (a) very vague diagnosis…My mother-in-law was doing tons of reading on the internet and discovered something called Moebius Syndrome…
“We were given a list of neurologists to call…(One) suspected seizures. Though a 24-hour at-home EEG showed no clear signs of seizures…she prescribed Phenobarbital and said we may need to keep him on it until he’s two years old…We (wanted) a second opinion…A few weeks later, we got into Columbia University children’s neurological department…
“The doctor (showed us) a textbook and said, ‘Willem looks a lot like these babies — I think he does indeed have Moebius.’ Finally, a doctor agreed that he exhibited the symptoms: no lip closure for a proper suck, no lateral outward eye movement, no blink reflex, very low muscle tone…
“A 48-hour EEG showed no seizure activity, so he was weaned off the drugs…Amazingly, at the same time, three-month-old Willem Wuebben (began) nursing without bottles or other aids!
“At nine months, he sat up on his own…After he was a year old, he started scooting on his butt, putting holes right through the bottoms of his pants! Willem’s amazing physical therapist recommended orthotics for his feet; he also used a walker a bit…At 18 months he had his first strabismus (eye) surgery…(H)e wears prism glasses…Finally, at 2 years and three months, he took his first steps…
“(D)uring the day it wasn’t uncommon for him to fall into a deep sleep while eating…He still cannot take the step out of our minivan (a depth perception thing?) He has a hard time with the coordination of getting his shoes on. BUT we are watching him slowly master getting his own shirt on, zipping up his footie pajamas, brushing his own teeth…We work on speech therapy regularly…”
Willem, an A student who mainstreamed into the school system last year, read a poem at the ceremony and handed out pencils to the commissioners. Revenue and Finance Commissioner Thomas Evans told him “You’re my hero today,” while Mayor Alphonse Petracco congratulated him on his “fantastic” accomplishments. Willem’s father Michael Wuebben said that his son’s greatest attribute is compassion — “no matter what he’s feeling, he’s always worrying about others.” And his mother predicts: “Having watched Willem overcome so many hurdles in his young life, we know there’s nothing he cannot do!”
Speaking of fantastic accomplishments, congrats to Moebius Syndrome.info for scoring their goal of 10,000 likes on their Facebook page — click to join in!