Trisomy 18 Mosaic
25th October 1951 ~ 24th August 1999
Aged 47 years

Robert Alden

When I learnt of Alex's diagnosis I strove to learn more about this disorder and how it would effect him and his life. One of the very first people that I heard about was Paige Barton, an amazing lady who was in her 40's and who had overcome many obstacles and achieved much in her life.

I was inspired and longed to meet Paige for myself. I was very fortunate and did indeed meet Paige when Alex and I travelled to Utah. She fell in love with Alex as you can see from the picture above. We became friends, and even after I returned home to Australia I continued to correspond with Paige via e-mail and letters.

Doctors and friends were amazed that I was able to personally talk to someone who had Trisomy 18. But for me I was just corresponding with a very dear friend who just happened to be able to understand what Alex was going through first hand.

Paige loved to hear about Alex, about the work that I was doing on the internet. She truly cared for each and every one of our children, laughing at their antics, proud of their achievements, and shedding a tear for those who could not stay. Like a child she was amazed to be able to talk with someone in Australia.

During 1999 Paige's health did deteriorate. For a few years she had suffered mysterious pains in her arms and legs, both which were becoming weaker. Her hearing was getting worse and she was desperate for a better hearing aid and FM system, something she was having trouble finding the money for.

Unfortunately I could not travel to the SOFT conference in 1999, but a dear friend in Australia, Tracey did. Tracey took with her a gift for Paige from me, a pair of hearing aids. Paige was overjoyed at the gift.

Sadly, though, she was only able to wear them for a very short time as shortly after the conference Paige's health deteriorated even further, and she passed away peacefully on the 24th August, 1999.

I lost a very dear friend that day, and my heartaches and still I cannot believe that she has gone. The world also lost a shining light, someone who made a difference and who made this world a better place. But through Alex, indeed through all of our children Paige lives on.

I do take comfort that I will meet with Paige again, and that while I wait for that day Paige is welcoming those of our children who cannot stay here with us. In my minds eye I can see Paige sitting in a rocking chair, children on her lap and at her feet, telling them stories of love, hope and promise. Comforting those who miss their parents and teaching them how to paint rainbows for us here on earth.

Farewell my friend......

Below is the tribute to Paige that was written in the Bangor Daily News and also a poem that I wrote in memory of my dear friend. I think you will agree that Paige was a remarkable lady who is and who will be greatly missed.

If you knew Paige, or perhaps have some photographs of Paige I would dearly love to hear from you. Please don't hesitate to e-mail me.

I will miss you my friend.............
But now your legs don't hurt.
They are strong again to allow you to run free
No more callipers, walkers or wheelchairs
To slow you down
Now you can go anywhere my sweet friend
Your arms are strong again
To cradle our precious angel babies close to your heart
And bounce them on your knee
No more need you fear that your strength will fail
and allow them to fall from your loving grasp
No longer are the sounds of the world muffled and silent
Now you can hear clearly the whisper of the wind,
The rustle of the trees, the laughter of the children
And the silent flow of our tears
And you will be there my friend to know when God calls
One of our angels home again
Your loving arms, smiling face
And tender gentle spirit will encompass each and every one
Until we can be all be together
I only wish for one more hug, to feel your arms again
To see your smile and hear you laugh.
One more chance for you to see "our" boy..........
I will indeed miss you
You will always be our inspiration,
our guardian light
Our friend.................

Karen, 1999

At the SOFT Conference in Florida in 2000, Dixie, a very dear friend of Paige's brought along Paige's "Hope Bear" to auction and raise funds for SOFT USA. "Hope Bear" was much loved by Paige, and she had him at the hospital when he died.

Unbeknown to me, my list friends who were at the conference collected money between them and bid on Hope Bear as a gift for me!!! I am sure that they have no idea how much that gesture touched my heart. Their bid was successful and Tracey was entrusted with the task of bringing "Hope Bear" home to Australia for me. I am very indebted to "Fawna" who apparently orchestrated and co-ordinated this little piece of subterfuge.

They also purchased a conference T-Shirt and all signed it!!!

I was again deeply touched when after more than 20 hours on board a plane, Tracey and her family called in to my home to give me "Hope Bear" even before they had slept or even gone home.

"Hope Bear" now sits with me day and night and has shared many tears and also joys. He is a great source of comfort and inspiration, not just because he belonged to my dear friend Paige, but because he represents the love of my Trisomy family as well.

There are many things that an extra chromosome does, many doctors feel make our children "incompatible with life", however what they don't see is the love that that tiny little chromosome creates and passes on to who all who are touched by it.

Visitors since August 1999