Global Genes Project and Fund

My Andrew born 29-9-1989, died 22-11-1989, aged 55 days. He had Campomelic dysplasia. They think his gene SOX9 is faulty. Babies are still dying.




My friend, Ellen had two CD babies :
Happy 8th birthday sweet Angel! Avery bravery! Born at 9:04AM eight years ago today.
Avery was born 2/21/2004. She lived 33 hrs and died 2/22/2004. Hope was born after Avery. The doctors did not believe that we could ever have another child with Campomelic Dysplasia.





http://www.facebook.com/globalgenesproject
Global Genes Project and Fund
Non-Profit Organization · Dana Point, California

WORLD RARE DISEASE DAY


World Rare Disease Day is a time when the global community comes together in unity, to build voice, awareness and support for the hundreds of millions of patients and their families affected by rare disease.

The Global Genes Project™ is a campaign sponsored by the RARE Project helping individuals and organizations to participate in this annual Day Of Unity.

Show your support, find resources, and for ideas on how you can help raise RARE Disease Awareness on World RARE Disease Day.


Can you help us spread our "1 Million People for Rare Disease" message so our voices can be heard in Washington? Share with family, all of your friends and on your personal pages. Ask them to join together with us and others in the rare disease community who are fighting for treatments and cures. Rare Disease Day is Feb. 29.

Please also join the discussion at www.rarediseaseday.org or www.rarediseaseday.eu.

For questions related to Global Genes Project and World Rare Disease Day activities, please contact Amyg@rareproject.org.

Plunket and me

I’ve signed up as an online collector for Plunket's 2012 Appeal.

Plunket’s Appeal raises vital funds for a wide variety of services , such as parenting education courses, car seat safety schemes, education in schools, toy libraries and many other valuable resources and programmes.

In the 80s, I was a young mum 3 times. I had no family in New Zealand. Plunket was family to me. Plunket's care was epitomised when I was sick when I was pregnant with Andrew and after he had died. I could never repay what Plunket did for me. I tried by collecting door to door, I tried by writing about Plunket. I wrote in detail about Plunket's help in my book and in my other posts.

Diary of a bereaved Mother http://annkitsuetchin.blogspot.co.nz/

http://ann-mythoughtsandphotos.blogspot.co.nz/2010/11/christmas-in-rocket-park-2010-and.html

http://annkschin.blogspot.co.nz/2009/06/plunket-society.html
These services rely on community support to keep going. Your support will assist Plunket to give every New Zealand child the best start in life.

Please consider making a small donation, every dollar counts. Thank you for your support!


This year they're trying something a bit different: an online version of the traditional street collection. Please click on this link:



http://appealcollector.plunket.org.nz/collect/annchinplunketappeal
ann Chin

Christchurch earth quake baby victim. Jayden

In the forest, a little sapling is trampled down and killed. Today, at the anniversary of the terrible earthquake and his death, I think of his mum.



Photo: courtesy NZ Herald.

On Feb 22, 2011, an earthquake jotted Christchurch. Among the 185 who perished, baby Jayden made me cried most.

His mum, Tracey made sure he didn't die in vain.



Christchurch earthquake: Baby's death sparks trust
By Vaimoana Tapaleao
5:30 AM Wednesday Mar 2, 2011



As eight-month-old Jayden Harris is laid to rest today, a trust named in his honour will look to help other children with head injuries.

Jayden, one of the youngest victims of the earthquake, was killed instantly last Tuesday when a 21-inch television fell from a chest of drawers on to him.

It was revealed mum Tracey had tried desperately to protect her son, but the force of the earthquake had knocked her off her feet.

The trust was set up after housewife Clare Smith, of Lyttelton, read about Jayden's story in the newspaper.

"At the end of the story it said his mother, Tracey, wanted to create a trhttp://www.blogger.com/img/blank.gifust to support children with head injuries ... " she said.

"It really touched my heart and it made me cry."

Mrs Smith had donations from friends for a different project and after reading Jayden's story felt some of that should help his mother's dream come true.

People can donate at any Westpac branch to the Rainey Collins Trust, 03 0566 0082260 02, reference: Jayden.

http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10709590

Reminders, reminders, reminders.

I teach English as a Second language and withdraw children from from class rooms to my teaching space. My school is renovating parts of our building, and now I am banished to the Wild west. Yesterday, I was walking this Columbian kid and the sky was dark.
He said, " We better go fast, there is thunderstorm."
The rain started pelting down on us.
Last night, I was having dinner at a friend's house. We were sitting in her covered deck, but the rain came down like a waterspout. So we had to move the table.
This morning, I listened to the TV news as I blog. I hear the word "Waikumete" and turned around to watch the TV screen."
We had so much rain in West Auckland in the "Waikumete" area, there are flash floods. Houses and cars are flooded.
Why does "Waikumete" make me turn my head?
Andrew's grave is there. I hope the flood doesn't sweep away the graves.

I posted The World Day of Prayer which I am involved for Malaysia. It will be on 2nd March, 2012.

My very good friend and adopted sister, Jenny Yau-Peng Chew facebooked me: 2nd of March, never slip out of my mind....Ah Koh passed away on this day exactly 12 years ago on this world day of prayers! Right timing, we will all pray together for him. Thanks

Ah Koh was my very first student when he was 13 and I was 18. He died so young. I have adopted their mum as my mum, and I put this photo as the leader photo of my facebook.


Here in August, with my KAI/ adopted mum Mrs. Chew Tien Kui. There we are, two bereaved mums.




Why the parakeet photo?



A pair of parakeets come to my apple tree and eat my apples. I watch from inside my house, and they are there for a long time. The moment I get to the garden, they fly away. They are like our departed loved ones, you can see them, but when you approach them, they fly away.

Thinking of you, Megan.

It is Christopher's 26 birthday.




Megan's heart is far from celebrating and cooking a storm,







Christopher won't be surfing,









Christopher won't be windsurfing.















Megan and Christopher never walked on a beach as mum and son.













Megan wants no expensive flowers.



Because a horrible thing called SIDS took Christopher away.




My poem for Megan today.

It is Christopher's 26 birthday.

Megan's heart is far from celebrating and cooking a storm,

Christopher won't be surfing,

Christopher won't be windsurfing.

Megan and Christopher never walked on a beach as mum and son.

Megan wants no expensive flowers.

Because a horrible thing called SIDS took Christopher away.







Sudden infant death syndrome (SIDS) is the unexpected, sudden death of a child under age 1 in which an autopsy does not show an explainable cause of death. Symptoms: Almost all SIDS deaths occur without any warning or symptom


Megan Lee Facebook
Happy Birthday, Christopher Matthew. 26 years ago today, you came into my life, and you taught me so so much. I miss you just as much today, as I ever did. You are now, and will always be, my firstborn son, and you will always hold a special place in my heart. I love you son. Now, forever, and for always.

Today at 12:00am until Tomorrow at 12:00am


Wherever you are ~ No need to leave your home.
This is a virtual event. You don't need to go anywhere, or do anything much, except spend two minutes thinking of a special, precious little boy, who passed away far too soon, on May 30, 1986. He was 3 months, and 3 weeks old. ♥ ♥ ♥ ♥ ♥urfing,

painting in the sand

When we were doing the documentary "It's Okay to cry", GLENNA CASALME, Associate Producer told me about Carly Marie. She too is a bereaved Mum and her project to heal was to paint in the sand. http://carlymarieprojectheal.com/

I am not artistic like her, I can't duplicate her work, though my kids have written names and drawn love hearts in the sand.

I recall having taken these photos, and God is the ultimate artist and healer. God painted these scenes. Today, I attended our Sands monthly meeting. I go there to support newly bereaved mums because when I was newly bereaved, a bereaved mum of 17 years was there to comfort me. She was God's nurse and 22 years on, I am trying to fill that role.

We talked about Rainbow kids. I am thankful for my rainbow kid, Sam. Without Sam, I would not even have looked at this baby playing in a hole in the sand.

I want to thank Catherine Dodd of Australia, who is a bereaved mum herself. She told me about rainbow kids and reminded me of Carly's work.