My book "Melas Angels"--Betty's first year (1)

Betty's first year (1)

Betty was born 2 weeks premature. I stopped working one week before she was born.

We celebrated Betty’s homecoming with a nice supper.

Remember those little clothes we bought long before Betty was born? They turned out too big for our new-born baby. Patrick had to run out to get some right size clothes for Betty. The new clothes fit, Betty looked lovely as a doll.

Giving a newborn baby a bath is a big challenge. You could hold her entire body in one hand and wipe her with a wet towel with the other. I love the smell of the baby, and can’t help holding and hugging her all day long. I have 2 sisters and a brother. I am the eldest. My brother is married and my sisters are still single. Betty was my parents’ first grandchild.

Patrick has 2 sisters and 3 brothers. He is the eldest. Patrick’s parents already have several grandsons and are delighted to have their first grand-daughter, Betty.

My book "Melas Angels"--My daughter was born (2)

My daughter was born- (2)

Betty, our little daughter, weighted only 6 lbs. 3 oz. at birth. Although she looked weak, the general check-up at the hospital confirmed that everything was normal. However, she had to spend her first week in the hospital’s baby room, and since I lost a lot of blood during labor, I was very weak as well and had to stay on a few days longer than I should at the hospital. At the end of the second week, Betty went home with me – it was such a warm day!

Patrick and I have been married for five years. A year before Betty’s born, when we knew we were going to have a baby, we bought this beautiful 3-bedrooms town house and spent most our weekends decorating it, in particular the baby’s room – which was filled with toys and little clothes.

We felt so blessed, Patrick and I. There we were, three of us. I spent endless hours staring at my little one and coming to terms with the fact that she spent many months inside my body, and now she is an individual. Look at her little eyes and mouth – she cries, she smiles, she eats and she sleeps.

My book "Melas Angels"--My daughter was born (1)

My daughter was born (1)

At 7:00 Am., July 14, 1987, I went into labor. Patrick, my husband, immediately took me to the Salvation Army Grace Hospital. The nurses checked on me at 15 minutes intervals. Patrick has just started a new job and as much as he wanted to stay with me, he had to tear himself away at 9:00am to attend a company meeting.

At 10:45am, the nurse came in and told me it was time, wheeled me into the delivery room, and informed the doctor at the same time.

I kept hoping Patrick would be back before the baby arrived but sooner that I thought, I heard the cry of a baby, it was my baby telling the world she has arrived. The nurse held her in front of me. She was the most beautiful thing I’ve ever seen. I was wheeled out of the delivery room, with my daughter by my side, when Patrick walked in. He was excited to see our little daughter and me. The little one sneezed, her tiny lips were kind of purplish – may be she was feeling cold, we thought, we wrapped her a little more tightly.

Facts about our genetic disease (6)

The medical research is getting more advanced day by day. If we know that this mitochondrial disorder disease existed in our body but has not yet developed, we can take the medication and supplement to prevent it. I hope, some of you will be alerted after reading this true story, so that some incurable diseases will be prevented in the early stage. Also, I hope that you can understand how horrible this genetic disease is.

It is simple for you or me to write an article, but it is not easy for a mother to write down the story of her deceased daughter. I gave life to my daughter, she was part of my body, I watched her growing our, from baby to teenager, from her birth to her passing away. Spring has come and autumn came. Sunrise and sunset. She had come and gone. When I wrote about certain part, I thought of her, my tears rolled down, my vision became blurry, my heart was broken. I could not continue the writing.

Everyday, there are unfortunate happenings around us. If we understand the facts, we still can go through this valley of the shadow of death. We will fear no evil. If some of you have this mitochondrial disorder disease or similar diseases, after you read my story, we can share the experience and burden of life.

I will start to post my book next blog article, the "Melas Angels", my daughter's true life story.

Facts about our genetic disease (5)

In a sorrow, after our daughter passed away, we let our son to have this disease tested. Very unfortunately, he has this disease too, but the percentage of the abnormal cells in his body is much lower than his sister. Of course, we are so sad. It is a fact, we must accept this fate, and fight for the battle of life. Since we know that our son has this disease, we have to take all kinds of pre-caution. We wish our son can grow up to be a man one day. Our son is a very active and smart boy now. Nobody will suspect that he has this horrible genetic disease. He is still so young to understand the happenings in these days. I must write down Betty’s story, so that when he grows up one day, he can read this story about his sister himself and understand these sorrow days of our family.

Facts about our genetic disease (4)

My daughter's final days were passed in a very painful way, her body function was shutting down slowly, she fell in semi-coma, we did not know whether she had feeling, but we suffered painfully, helplessly, and hopelessly. I watched her walking towards death. I wanted to grab her back, but I could not, she still had gone.

Because of our daughter, we knew this genetic disease existed in our mother-side family. One year after my daughter had developed the illness, I was diagnosed to have this disease. Another year later, my brother (he just passed away last December in 2006) and one of my sisters, i. e. Betty’s uncle and aunt, were also diagnosed to have this disease. All of us are taking medication and supplement to prevent and stabilize the development of this disease.

Fact about our genetic disease (3)

We had Betty many years after our marriage, and then, we had a son when Betty was six years old. A family with parents, daughter and son is supposed to be a happy family. But, we never knew, God played a trick to us. Our daughter passed away with this disease at early age. And this genetic disease was passed from me to her, my heart feels extremely painful, and guilty. I have this MELAS too, but I still could grow up to be an adult, get married, and have children. Until now, I become a middle-age, my symptoms start to develop. Since I know this disease, I can take the medication and supplement to stabilize it, I hope that I can have a normal life in the later days.