Remember not the sins of my youth
and my rebellious ways;
according to your love remember me.
for you are good, O LORD.
Good and upright is the LORD;
therefore he instructs sinners in his ways.
He guides the humble in what is right
and teaches them his way.
For the sake of your name, O LORD,
forgive my iniquity, though it is great. - Psalm 25:7-9,11
Two brothers with rare blood disease appeal for help
Wednesday, July 16, 2008
Philippine Star
A mother of six, Lorena de Guzman comes from a poor family in Bulacan. Two of her children, Gian, 13, and eight-year-old Rhael have Thalassemia Major, a rare blood disorder.
The De Guzmans live at 077 Cacarong Matanda, Pandi, Bulacan. Lorena is a housewife and father Carlito is an embroiderer. For the past eight years, Lorena has approached practically all available government and non-government options to prolong the life of her sons. A friend suggested she approach The Philippine STAR’s socio-humanitarian arm, Operation Damayan.
What is Thalassemia?
Thalassemia is an inherited disorder of the blood. Depending on the number of abnormal genes, patients can have mild, intermediate or severe form of Thalassemia. Brothers Gian and Rhael suffer from the most severe type called Thalassemia Major or Cooley’s Anemia. In a survey in the United States , only 513 Americans have this disease.
Patients with this condition completely lack a certain protein in their hemoglobin. And since hemoglobin is part of the normal red blood cells of the body, these patients develop severe anemia.
Symptoms start to occur at two years of age when the patients develop fatigue, difficulty of breathing, paleness and dark urine. If untreated, patients develop heart failure or infections leading to early death. Diagnosis is by simple blood tests.
The usual treatments for Thalassemia Major are regular blood transfusion, medications and spleen removal. Complications are common with frequent blood transfusion because patients develop iron-overload. Close medical follow-up is needed.
Starting at age five, Gian and Rhael have been undergoing monthly blood transfusions at the National Children’s Hospital worth P5,000 per month each. As a result, both Gian and Rhael have dark gray and stippled faces from too much iron in their blood. Their whole bodies, internal organs and skin, are stained dark ashen gray.
Upon examination, Gian’s latest Serum Iron levels are at 5515 ng/ml, which is 15 times higher than a normal person. As a result, Gian’s spleen has enlarged tremendously, giving him a protruding belly.
How long will they live?
According to medical science, the prognosis of Thalassemia Major is not good. Some patients live only until their teens. With the best care, they can live up to adulthood. Gian would also need to undergo a spleen removal surgery later on to prolong his life.
But despite his weakened condition, there is something so innocent and sweet about Gian.
In their Bulacan home, Gian loves to care for wayward animals: a goat, two dogs, six pigeons, 12 native chickens and a guinea pig. Gian then sells the chicken for P100 each and gives all the money to his mother.
For Gian, as long as his mom is there, he is safe. In return, Lorena’s only wish is to have her two sons live a bit longer and with some comfort.
The brothers need around P10,000 a month to have a fighting chance at life. This amount will meet their medical expenses and help prolong their lives.
For those who would like to help Gian and Rhael, you may contact their mother Lorena at cell phone number 0916-377-7969. You may also donate through Operation Damayan at telephone number 527-7901.
Lorena would like to thank the people who have helped her children: Ms. Stephanie Zallow, a German nurse, Bulacan Gov. Mendoza, Mr. Daniel Razon, Dr. Bernie dela Cruz of the Quezon City Red Cross, One Pharma, and the kind personnel and doctors of the National Children’s Hospital.
E-mail questions to drwillieong–@gmail.com
Battles everyday. In the spiritual realm and in its physical manifestation. Big ones, small ones.
I often wonder when it would all end. I happily win some but I tragically lose a lot too. Often, I fight the same battles and it makes me despair. What if I can only move on to the next stage if I win a particular battle? Does it mean that I would never be able to move on? Since I seem to lose the same fights?
But what else can I do but rise again and face the succeeding fights even if they are of the same kind? I have to face my enemies. Tactical strategies are constantly changing. Certain battles are fought head-on, demanding courage. But they can be tricky, too. They can creep into your life and stab you on your back while you are confidently thinking that you are invincible. Then you realize, too late, that you are not.
The war is raging. You have to be on the move, alert, ready to take up arms and fight. Because your life, indeed, depended on it.
My only recourse is God. Otherwise, where else would I go? I only feel safe and loved in His presence. I know that He will never allow me to stray too far. I constantly pray though that I would be able to hear His call above the din of sins and finite joys that this earth offers. There are still many, many battles to be fought and I truly hope that I would be able to survive. I know I will, with His help. I can’t help though to wish that the war were over. For good.
I love stories. Novels of considerable length which narrate the complexities of human relationships and histories. Short stories which provide a short glimpse into our lives. Poems which often contains the deepest emotion of love and despair of the writer. Even a haiku whose poetic presence is fleeting yet leaves us with a lasting impression.
Oftentimes, stories are like a deja-vu of my life, reminding me that I am not alone in my trials and victories. I have to acknowledge the fact that at least one other person in the six billion who inhabit this earth went through a similar situation. Much like Noah who discovers the beauty of the rainbow after the flood, stories can bring encouragement and the promise that all will be well.
Stories take me into worlds that are different from mine. They leave a mark in my mind and soul, exposing me to dreams and infinite possibilities.
My life is a story being narrated. As the pages of my life get written, people weave in and out of my story. They, too, have their own pieces to tell. Sometimes, those that they narrated have been lies. Knots and tangles have been created and with such complexity, I try to break free in order to find serenity. It is too late. They are deeply entrenched in your life. The only choice is to make new stories.
O Divine Master, grant that I may not so much seek to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life.
