My husband of 41 years passed away 3 months ago after having suffered HD for more than 15 years.

The grandchildren had never known their Poppa any other way than sitting in his chair or in the latter years in his bed. They were all very very close to their Poppa and probably had more to do with him than a lot of grandchildren with their Poppa.

They were the little people that put a sparkle in his eyes most days.

On his death they stayed with him right up until the casket was closed 3 days later. They rode with him to the funeral service and from the service to his last resting place. The 6 children aged from 3 - 12 years floated a balloon each as the casket was lowered.

I have no hesitation in saying that our grandchildren have become very aware, more sensitive and stronger having had to suffer with the rest of our family to see our beloved husband; father, father-in-law and Poppa suffer with HD.

The children all said prayers at the service but I would like to share with you all a poem our 12yr old granddaughter wrote in secrecy, with no help, on the morning of the service.

Life is so precious and out of every day of suffering and sadness comes so much loving and kindness.

Name Supplied

~~~~~~~~~~~~~~~~~~~~~~~~~~

Our Poppa was very sick

Something that he didn’t pick

Our Poppa was very strong

As though there was nothing wrong.

One thing that I remember is that he hated his teeth

He would throw them out the window or at your feet.

I remember early in the morning he’ll come downstairs

And play cards like Snap and Pairs.

Poppa used to run and run

Something that he done for fun

And when he needed to be in a chair

He would still compete fair and square.

He always used to bet on a horse,

He always watched them race their course

And sometimes when he had a win

He’ll open up the cupboard and get out the gin.

Now it is time to say good-bye

But Poppa wouldn’t want you to cry.

Heavens the place he will be,

Surrounded by love and his family.

My mother died 17 years ago of HD. I have one brother, married, with three boys. We’ve both had a test and he doesn’t have Huntington’s but I do.

We’ve been to many funerals. Our father died eight years ago of a heart attack, aged 53. Another funeral was for a friend, 23, who was running around laughing one week, diagnosed with leukemia and five days later he died.

Like me, they were Christians and love our Lord. I believe in making the most of every day because you don’t know what tomorrow will bring. So it doesn’t bother me whether I die tomorrow (or in five or ten years time) of my HD because I know where I’m going.

I’ve been skydiving twice and bungy jumping twice. I’ve also done quite a lot of travelling — to Scotland, Wales, England, Malaysia (where I was bitten by leeches!), the Philippines, Turkey, Israel, Egypt, Western Europe, Eastern Europe, Bosnia, Croatia, Italy, France, Germany, Australia, Switzerland and Prague.

In Canada I was walking out the door up in the Rocky Mountains and there was a bear about four metres away. So I got my camera, walked after it and took some photos.

I went to the USA and drove from New York to Los Angeles. In Las Vegas, on top of some casinos, they had a roller-coaster, so we went on three of them. One was 1000 feet up in the air. In Los Angeles I went to Six Flags Magic Mountain, which had many roller-coasters.

In Africa we did an overland safari from Kenya down to Capetown, camping out in the Serengeti with lions, tigers and snakes! There was an elephant about four metres from our tent. I went boogie-boarding down the Zambezi River. We jumped off a boat into a lake with about 20,000 crocodiles in it!

I’m just saying through all of this, to get out there and try something new. Don’t let your disease stop you from accomplishing what you want to accomplish. Life is not over.

I work at Gallaghers in Hamilton, and when I told them about my problem they were excellent to me. I asked for another job and they gave it to me.

There are heaps of "ups" with HD and there are a lot of worse things - like AIDS, or like my friend who died of leukemia within five days, or having someone you know commit suicide, or having children who die young. There is only one thing that gets me, and that is I won’t grow old.

We’ve got a great support group at MS Waikato Trust. The people and staff are cool and

hard case people. The Trust had two tickets for a hot-air balloon when they were in

Hamilton, so they rang up my good friend Donovan and me and we both went for a ride.

It was a great experience.