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I lost my first son 51 days after his birth, Now lost my second son even before he was born.
Rare genetic disease-Myotubular Myopathy


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#1 Sophia Wu

Posted 15 June 2010 - 03:57 PM

Our angel Nicholas was born at 8:15 on March 31, 2009 (Australian Eastern time zone), died at 15:37 on May 20, 2009.

I did not know that I am carrying genetic false gene until we saw Nicholas' condition at birth. My husband and I finally understand that life is so valuable. We also realize that the world is lovely although the reality is cruel.

For so many days(51 days), little Nicholas has been struggling hard to live in this world. He is really very strong. Not like other babies, Nicholas was born with no sound of crying. He could only tell us that he was crying by his tears, silent tears.

Nicholas loved his father and mother. He liked his family so much. Like normal babies, he loved drinking milk, but unfortunately he did not have enough strength to suck and swallow his mom's milk and had to drink milk through the tube. On the last day of his life, we dip his dummy into his mom's milk to let him have the chance to taste the taste of mom's milk and it ended up with him sucking that dummy using up all his strength till the last minute of his life.

Nicholas is very smart. To prevent the dummy falling out, he used his left arm to hold his right arm, which held the dummy. We felt that he had grown up a lot in those 51 days.

Nicholas is very cute. His fingers are like mine, which are long and beautiful while his feet are like his father, which are flatfeet.

Nicholas was quiet at the moment of passing away. It was sad for us to see him leave us but after the long-suffering, we all felt it is good for him to leave so peacefully and from then on he would never suffer from those pesky machines and tubes.

After this tragedy, our mood was really low until I found myself pregnant again in February this year. We were happy at the beginning but of course worried if this one is gonna be the same condition as Nicholas. We waited three months to do CVS and waited another one month expecting good news from the hospital. However, the news was that our second son has exectly the same condition as Nicholas. It was really hard to believe this but my husband and I finally faced it and decided to terminate pregnancy.

I feel the hardest thing in the world is that we have no ways to save our loved ones. Because this disease is so rare, now only one or two group in the world are doing the research with limited fund. It is sad to watch our son Nicholas die in our arms and even cruel to feel the moment that we had to say good bye to our son Sydney even before we say hello.

My husband and I decide to go for IVF afterwards. We just wish we can gain some luck and be able to have a healthy child in the future.

However, we will love our two sons, Nicholas and Sydney for ever in our heart.

To know more about Myotubular Myopathy, please visit http://www.myotubulartrust.com/
We posted Nicholas' vedio on http://www.youtube.com/user/NicholasYuan09

#2 meggie2

Posted 15 June 2010 - 04:10 PM

I'm so sorry for your losses.  The way you wrote about little Nicholas and Sydney was beautiful and inspiring.  

I wish you all the best on your journey.  Come and see us in the AC section when you and your husband are ready.  The ladies there are very supportive and helpful.  

M

#3 Benevolence

Posted 15 June 2010 - 04:18 PM

I am so sorry for your losses.  I cannot imagine the pain you and your husband must be in.  Thanks for sharing your story with us.

Edited by ~ky~, 15 June 2010 - 07:25 PM.


#4 *bright*

Posted 15 June 2010 - 04:19 PM

I am so sorry for the losses of your beautiful boys. I wish you and your husband very best love and wishes as you continue your parenting journey.

#5 i adore

Posted 15 June 2010 - 04:33 PM

so sorry for your losses , i couldnt stop crying at this story . u write about your son so beautifully.

#6 CallMeFeral

Posted 15 June 2010 - 04:41 PM

So sad.
All the best of luck.

Edited by ~ky~, 15 June 2010 - 07:25 PM.


#7 Happypinks

Posted 15 June 2010 - 04:53 PM

I am so very very sorry, I am in tears at your loss. Your videos are so touching, what a beautiful little man. I wish you all the very best in your journey ahead and admire your strength as it must have been difficult to write your story...I will spread the word and make a donation.

#8 flyingfree

Posted 15 June 2010 - 04:58 PM

I am so sorry both your sons Nicholas and Sydney couldn't stay hear with you and your DH.

Thank you for sharing some of Nicholas's story with us, he is very lucky to have such a wonderful mum.

Thinking of you and your angels.

Mandy

Edited by ~ky~, 15 June 2010 - 07:25 PM.


#9 funkymunkee

Posted 15 June 2010 - 05:08 PM

I'm so sorry for your losses. Wishing you all the best in your TTC journey.

Edited by ~ky~, 15 June 2010 - 07:26 PM.


#10 rose36

Posted 15 June 2010 - 05:21 PM

I am so very sorry.  Nicholas was just beautiful.  Your love for your little boys is beautiful.  God bless.

#11 Sophia Wu

Posted 15 June 2010 - 08:03 PM

Thank you all for your kind words. I have gone through so much pain and finally decide to post my story here to share what I've learnt. However, I feel myself so wordless in describing my feelings. Hope my story can inspire someone who is losing hope to live strongerly in this world after loss of loved ones. Our life is not perfect at all but it is just these pieces of unforgettable moments that make our life meaningful. I bet if any of you see my two sons struggling so hard to breath, you will never give up living in this world.



#12 Gummy_Bear

Posted 18 June 2010 - 11:40 PM

Nicholas is such a gorgous little boy, he is truly blessed to have such wonderful parents, and you are blessed to have given him life - even if it was for a short time, he truly was too beautiful for this world and even though he'll be in your heart along with Sydney, just remember that you are a fantastic person and have alot of strength within your own heart.

Look at his hair! Its beautiful! wub.gif  hheart.gif  hhugs.gif

#13 Soontobegran

Posted 19 June 2010 - 12:09 AM

I am so incredibly sorry. What a heartbreaking story, you are very brave to share it with us.
What a beautiful baby Nicholas is and what a lucky little boy to have such a lovely mummy and daddy who gave him a lifetime of love in 51 short days.
I hope that one day you will realise your dreams for a baby brother or sister for your two angels.

#14 quirkle

Posted 19 June 2010 - 12:45 AM

I am so sorry for the loss of both Nicholas and Sydney. The video of Nicholas is beautiful, what an amazing boy. Theres a moment in the video where the dummy is being put in his mouth and he looks like he gives a little smile. An angel.

#15 bryce's-mummy

Posted 10 July 2010 - 10:33 PM

I am so sorry Hun. I will pray for you. Can I give you some hope? Our now 9 year old is leaving us soon to make his journey home to Heaven. He has a rare disorder caused by a recessive gene that both myself and his father carry (not known to us until his diagnosis at age 4). We now have two healthy children (3 and almost 1) due to the remarkable science of CVS testing. We were 'lucky' both times to discover that our unborn babies did not carry both genes, and are therefore unaffected (they are, however, both carriers).

They are both my shining stars and my inspiration to live on at the end of the day.

So I pray for you that you too will find this inspiration and be able to give life to a healthy child as every decent human being should get the right too. This will only make you stronger even though you probably feel weak at heart.

xxx

Edited by bryce's-mummy, 10 July 2010 - 10:33 PM.





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