Angel Bear project

On September 7, 1993, our second grandson was born. The son of our eldest daughter Megan, and her husband Ron, he was named after both his grandfathers - Lachlan Ronald David Moore.

Lachie had somewhat of a battle ahead of him, with a very bright older brother, Brodie, he had to emulate.

At about six months of age, his mother Megan began to notice little things about him that differed from the development of Brodie.

She kept this pretty much to herself, and just continued to observe, but it soon became apparent - only to her at first - that Lachie wasn't developing as quickly as Brodie had.

The rest of the family put this down to an over- cautious mother and pooh-poohed her concerns.But Megan persisted, and began taking Lachie from pediatrician to pediatrician for tests. Eventually, her worst concerns were realized when he was initially diagnosed with cerebral palsy.

Ironically, Megan's father – David – as a Cabinet Officer in Lions, had convinced Lions District 201Q3 to take on as a District Project the revolutionary Hungarian Peto Institute – a pioneering treatment regime for children with cerebral palsy.

Lachie bravely undertook his first Peto school, being
twisted, turned, stretched every which way as his

dad, Ron, took time off work to steer him through the revolutionary treatment.

Although some progress was being made, it was not up to the normal Peto standards, and he suddenly began developing epilepsy.

Then, the final diagnosis - Lachie had Angelman's Syndrome...a genetic disorder which meant he would probably never talk, would be very slow in learning to walk, and would face a life very different from his brothers.

'Lachlan' - Irish for war-like. "That's not our Lachlan", I decided whilst reading a baby name
book in the bookshop. "Not my gentle, happy, placid boy!" Then as I drove home from work the next day I began to think about that definition and the "war" we had fought over the last four years.

Lachlan came into the world with high drama. We were told during labour that he could suffer brain damage or worse. So when I began to suspect that my three month old "perfectly behaved" baby was not developing properly we had no reason to doubt the eventual diagnosis of Cerebral Palsy.

The diagnostic process was the first battle our little soldier fought. I will never forget listening behind a closed curtain to the doctors trying to give Lachlan a drip and sedate him for an MRI Scan, that feeling of helplessness I'm sure every parent dreads.

All those tests, prodded and pricked, and with little else but a cry, and then that irrepressible smile fought its way through.
Then came the endless therapy. The Peto Institute conductive program, he rolled his way into that and came out marching at the end, five days a week, five hours a day and boy did he fight us on that one. He argued and complained in his own non-verbal way through every task, I think the soldier had many thoughts of going AWOL during this time.

But the battles had been small; the enemy was looming over the hill. Lachlan's epilepsy came to the fore near his second birthday. And in true Lachlan style he couldn't have a normal fit, no we had to entertain and bemuse the entire neurological department of the Mater Children's Hospital with our original version of drop attacks.

So the numerous hospital stays began and throughout it all that irrepressible smile fought its way through.

"Angelman Syndrome – I think I have heard of that", we declared to our neurologist. More tests followed and finally our little soldier had a title that described him perfectly.

The battles are still rearing their heads but if this gentle, loving, accepting soul can survive the past four years, I am sure he can survive anything.

So in retrospect, our Lachlan is a warrior - I see that war-like face when the walking frame will not steer in the right direction, or when dinner is not immediately on the table when Lachlan sits down, or when anyone dares to take his toy, or worse still his balloon. One thing is for certain, at every inopportune and hopeless moment, during every war and battle he will fight, that irrepressible smile will always fight its way through.

As grandparents of a handicapped child, one is often at a loss to know just how much you can help.

Living over 1,000kms (600 miles) away from Lachie, there is very little we can do in the way of direct help.

But Angelman's Syndrome is very much an under- researched problem, and even though more and more research is beginning to be undertaken, shortage of funds for what is still a relatively 'new' ailment is hard to come by for the dedicated doctors working on it...hence our involvement.

The 'Angel Bear' is the concept of my husband – David Thomas – to produce a fund raising source for the future research of the syndrome.

I am making the bears for the various Australian branches of the association to sell to raise much needed money.

The first Angel Bears were presented at the first Australian conference for the Association in Melbourne in October, 1999. Since then, they have sold world-wide in ever increasing numbers.

Each of the mohair bears I make is individually numbered, with the No.1 bear originally planned to go to Mrs Audrey Angelman - the widow of the doctor who discovered the disease in only 1965, Dr Harry Angelman.

Audrey was the Honorary World President of the Angelman Association continued to take a very active interest in the work

The Angel Bear...born of two grandparents' need to do something to ensure that, maybe one day, other parents and grandparents will not have to go through the heartbreak they went through. (Click on her to see a full version of the Angel Bear, or click on 'Next' below)

her husband started. But, unfortunately, she passed away before the bear could be delivered.

The No.1 Collector Edition bear formed part of the major fund raising for the Association at the conference when it was raffled off amongst those attending.

The concept has taken off, and bear collectors all over the world, have rallied to the cause and done their little bit for the Little Aussie Angels...our Australian Angelman sufferers.

To date (February 2005) over 80 Angel Bears have found their way into the homes of loving people who have decided to help out..

In the meantime, this is our little way of trying to do something to assist in the fight against this terrible affliction, and to leave something behind us dedicated to our own little 'Angel'...Lachlan Moore, his grandmum's and grandad's best little mate.