Star with renowned Filipino pianist Oliver Salonga.

“She lives up to her name. She is really a STAR.”

Now that she’s 12, I have already gotten used to people telling me that – of how our “baby” has become her name. Ben, our eldest named her while she was still in my tummy. He had a habit of talking to babies in the tummy, just like how he would with his first younger sibling, our second child Sofia.

“What if it’s not a girl?” I said to my son. He replied, “I’m sure she’s a girl.” And so when she came out, we nicknamed her just that – Star.

Star was a literally big bundle of joy to our growing family. Her older brother Ben, then 3 and sister Sofia, then 2, were both so fond of her. She came out 8.8 lbs., quite big for a premmie like her. Just like her older siblings, Star was born before reaching full-term. My OB-Gyn couldn’t figure out why I always had difficult pregnancy – Ben born at 27 weeks, Sofia at 32 weeks and then Star at 33 weeks.

Star came four days before Christmas. We were all so ecstatic with her arrival but her brother and sister were the most excited – they now had a live baby doll to play with. Not like Barbie who was stiff and wouldn’t react at all! Here was Star, chubby little thing, who would smile and coo-coo at them. And the best part of all – they could take turns in feeding her when Mommy wasn’t home to breastfeed. Star became the star in our home.

At three months, Star started attending an Infant Development Program. In short, she started going to school even before she could even walk or talk. She was such a jolly little baby that immediately, her teachers loved her. She was the biggest child in class. But it wasn’t a wonder at all — her teachers soon found out – because of how she loved to eat!

As she growing up, it became evident that Star would be a league of her own. She would amuse people with her wits and sharpness. She had a way of saying things as if she so understood the world. She always had opinion of things.

But as she was growing up, she also became more sickly — always in and out of the hospital for different reasons. And her frequent nosebleeds and unexplained bruises started to worry us.

When she was seven, she would nosebleed every day that we finally decided to take her abroad upon the hematologist’s advice. The hematologist suspected that she had a rare bleeding disorder. Could be von Willebrand Disease, she told us. “It is very likely, given your family history,” the doctor said. After all, my mother died of post-operation bleeding. My eldest sister went flat-line after she had post-natal hemorrhage. Thank God, she was revived. My other older sister had several miscarriages. I had three pre-term births.

We went to Queen Mary Hospital in Hong Kong to have the test. Since bleeding runs in my side of the family, I was also tested. When the results came out, it confirmed our hematologist’s suspicion — Star and I both have von Willebrand Disease Type 2M. Now it all made sense. Doctor in Queen Mary Hospital taking blood samples from 7-year-old Star

At first, my husband and I were so worried. How would we raise up a child with a rare life-long disorder? What would happen to her when she started to have her monthly periods? And to think that even with her frequent nosebleeds, we already worried.

But our fears proved to be unfounded. Our daughter is a STAR. And she shines the brightest at the darkest hours. She never loses composure during infusions or blood transfusions. Yes, she hates both just like any other “hemo” child. But because she knows she needs it, she cooperates. Especially if it comes with a promise of a Starbucks treat!

Over the years, she has learned to deal with her bleeds independently – sometimes to a fault. She knows that she has to pinch her nose for at least 15 minutes and tilt her head forward when she nosebleeds. She even teaches the school nurse that children who nosebleed shouldn’t be made to lie down. Sometimes, she hates it when she’s not allowed to run around like other kids her age (because she would bleed). But there are times that (because she’s so used to the bleeds) her high tolerance for pain and heavy menstrual bleed causes us to panic.

Only in May this year, we didn’t know that she was already bleeding for almost a month. By the time we brought her to the hospital, her hemoglobin and hematocrit dropped to a dangerous level. We had no choice but to transfuse. But other than that, Star has turned out to be a brave, confident young lady – never allowing the discomfort of having a bleeding disorder affect her.

Star dreams of becoming an artist someday, maybe study piano or performing arts in Juilliard in New York or an arts school in Austria. We can only pray for her dream to come true. And most of all, that she keeps her positive attitude in life. With that positive outlook and the grace of God, for sure she will reach her stars.

Note: This article was originally published in www.MyGirlsBlood.blogspot.com.

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About Andrea Echavez

I am an advocate for people with bleeding disorders. My daughter Star and I were diagnosed with von Willebrand's Disease Type 2M.