Family Stories - Nicholas

“Our son Nicholas was born at 8.15am on March 31, 2009 (Australian Eastern Time), died at 15.37 on
May 20, 2009 .

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. But unlike other babies, Nicholas was born with no sound of crying. He could only tell us that he was crying by his tears, silent tears. He was not diagnosed until the muscle biopsy result came back on the 30th day after his birth and he was diagnosed X-linked Myotubular Myopathy.

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 a naso-gastric tube. On the last day of his life, we dipped his dummy into my 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 in place. 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's, which are flatfeet.

Nicholas was quiet at the moment of passing away. It was very 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.

My angel was finally freed, and went to the place where he belongs to. However, his smiles, his tears, his everything will be remembered deep in our heart.

Please help to find a cure!

We posted Nicholas' videos on http://www.youtube.com/user/NicholasYuan09"

Yuke Wu