MOEBIUS SYNDROME IN THE NEWS
Today our story comes from New Zealand, where we get to read about the young man with Moebius David Hartley and his mother.  David's about to get a very nice surprise--a new puppy:
"Hamilton solo mum Leigha Hartley does not sleep – she dozes.
"I have to be able to hear the sounds David makes so I know when to clear his airway," Ms Hartley said.
David is Ms Hartley's five-year-old son and one of just six New Zealanders known to have moebius syndrome, a rare neurological disorder affecting cranial nerves that control muscles in the face and neck.
In David's case he cannot smile, frown or speak. He has difficulty eating and is visually impaired, though his mother is thankful he can move around on his own, including walking with the help of a walker.
"I do find myself being thankful that he is mobile and can do some things for himself, but he has to be watched by adults all the time so he has very little independence," she said.
Adult supervision is required to keep David's airway cleared using a special suction machine. Ms Hartley has no option but to sleep near her son to keep watch. "I have to clear his airway 20 times a day minimum – and even more often when he is sick."
The active youngster has endured close to 30 surgeries but, according to his mum, takes everything in his stride.
"He might not be able to show it but he is a really happy boy and incredibly loving and helpful," Ms Hartley said.
The pair are now preparing their Rototuna home for a new arrival, a whoodledor puppy which will be trained by Assistance Dogs New Zealand to recognise when David has difficulty and needs assistance.
"More importantly, it will give David a best friend with the added bonus of keeping him safe as well," Ms Hartley said.
Families are asked to meet the dog training costs of $10,000, so Ms Hartley has opened an online fundraising account to help raise money.
"I'm trying to raise $15,000 with any money raised over $10,000 going straight to Assistance Dogs New Zealand to help with ongoing work – they do such an amazing job and make a massive difference in so many families lives."
Mother and son have created their own form of communication. Although David is able to understand everything his mum says, he replies with hand gestures and movements that the pair have developed over time.
"The only thing missing is having a companion that David can call his own so he doesn't have an adult watching over him all the time – I'm hoping the puppy will give him that new lease on life," Ms Hartley said.
Anyone wishing to contribute to the Hartleys' dog training fund can go online to fundraiseonline.co.nz/leighaanddavidhartley"

What an amazing story.  Here's to our new friends Leigha and David...

"Singleness of purpose is one of the chief essentials for success
in life, no matter what may be one's aim." -John D. Rockefeller