Monday, April 22, 2013

MOEBIUS SYNDROME IN THE NEWS
This time it comes from New Zealand, and has to do with my friend Leigha Hartley and her brave son David, who has Moebius Syndrome.  Read on:

David Hartley and his assistance dog Rex are good friends
David Hartley and his assistance dog Rex are good friends
Hamilton mum Leigha Hartley jokes that she'd like to see Richie McCaw become the face and name behind the Assistance Dogs NZ Trust.

The reality is a high profile ambassador is what the trust needs to boost its profile - and its funding.

Leigha's son David, 7, was born with Moebius syndrome, an extremely rare congenital neurological disorder. David took possession of an assistance dog in December.

The syndrome means David suffers from facial paralysis so he can't blink, doesn't have full movement of his eyes and cannot form facial expressions. His vocal chords are also paralysed so he can vocalise but cannot speak. He also suffers from severe balance issues.

Rex has had a profound effect on David's - and Leigha's - lives. "Rex has fitted in perfectly," said Leigha.

Trained specifically to meet David's needs, Rex is David's constant companion. In time, David's eyesight is likely to deteriorate so Rex will act as a guide dog, but he can also act as a 'tether' for David who has a tendency to run off when he's out in public.

"David is bonding really well with Rex. It's not just me and David now. David wants Rex with him, he loves caring for another being," said Leigha.

A single mother to David, Leigha said her son had spent a lot of time around adults and Rex enabled David to be "a kid again".

"David has almost no balance so when he lets go of the wall he sways all over the place because of his ligaments. David can fall on Rex and he just takes it in his stride; he's big enough to cope with David's balance issues.

"Julie had Rex in mind for David because of Rex's quiet nature. He is so calm and placid. He's so well trained but has so much life in him."

But having Rex comes at a huge cost. Assistance Dogs NZ Trust founder Julie Hancox says it costs $20,000 to raise and train an assistance dog - and $48,000 for "whole of life costs". It pains Julie to ask families to fundraise for the dogs they so desperately need, but has no choice.

Leigha fundraised for three years for Rex and is grateful to Altrusa for its assistance, and that of a generous Auckland couple.

Leigha would love to see a high profile Kiwi put their hand up to be an ambassador for the trust which struggles financially as it competes alongside many other charities.

"It doesn't get the funding that other organisations do," said Leigha. And yet the dogs that Julie trains are for people with a variety of disabilities. "Our biggest thing is we aren't defined by a disability. We train a dog specifically to meet a person's needs. We begin with the basics, look at where the dog is best suited, and then continue to train the dog to meet that person's function loss."

Julie had Rex in mind for David from the time she recognised how gentle Rex's temperament was. Dogs can be trained to assist people with autism/Asperger's, Down Syndrome, developmental impairments, brain injuries, cerebral palsy, diabetes, physical and neurological disabilities.

A former guide dog trainer and instructor, Julie founded the trust in 2008. The waiting list for a dog is about two to three years.

"It would be shorter if we could secure funding for another permanent position. Until we secure more funding, we can't grow."

The trust receives no taxpayer funding, relying solely on donations, bequests and community support.

Julie says puppies are placed on a development programme at about eight weeks old. They are then socialised and receive initial obedience training. Puppies are placed with families that raise them and socialise them to the standards required by ADNZ. At about a year old, each pup begins more extensive training for the assistance role it's likely to perform.

Dogs are usually ready to be placed with an applicant at about 18-20 months.

For more details, or to donate to ADNZ, visit www.assistancedogstrust.org.nz.

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"Accomplishments will prove to be a journey, not a destination."--Dwight D. Eisenhower

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