It's March, and our hemophilia community in the US is celebrating Hemophilia Awareness Month. We celebrate advances in medicine, especially how far we have come in treatment, from whole blood to plasma to factor concentrates, and now viral-free and plentiful.
But that's only in the US and similar developed countries. Up to 75% of the world's population with hemophilia receives little or no treatment to stop bleeding. Compound that with extreme poverty and isolation, and there seems little to celebrate.
To support the goal of Hemophilia Awareness Month, Save One Life, the nonprofit I founded, is sharing stories every Wednesday in March to illustrate the challenges and triumphs of children and adults with hemophilia in the countries we serve.
We hope these stories will touch your heart and encourage you to become a champion of our cause--reaching out to family and friends to encourage them to sponsor a child or donate to a program. We have about 30 children in need of sponsorship--please visit our website and see these beautiful children who deserve someday to celebrate too.
Meet Rathish from India
Rathish became a Save One Life beneficiary when he was 17. At that point he had suffered so many untreated bleeds, he could no longer walk. His mother would carry him in her arms, even as a teenager, or he would use a wheelchair. Living in the country, he was confined at home, unable to go to school. For activities, he played on the computer, drew and watched TV.
Rathish's father is a day laborer, earning about $50 per month. His older brother, Sudhish, who doesn't have hemophilia, works as a welder to supplement the family's income.
When Save One Life's India program coordinator, Usha Parthasarathy, met Rathish, she was particularly touched by his condition. She organized a fundraiser to pay for surgery on Rathish's knees at a hospital 50 miles away from home. His mother used his sponsorship money to help defray other surgery-related expenses.
It took much courage and weeks of physiotherapy for Rathish to walk again, with the help of braces and crutches. Now at age 21, he continues to build his strength with exercises and walking every day. He is home schooling at the 10th grade level, and honing his computer skills.
Meet Inderjeet from India
This is a sad story, as Inderjeet, 15, passed away on February 28 from a CNS bleed. The only son of his parents, Inderjeet complained of a headache on Sunday evening. After dinner he became sick, so his parents made the two and a half hour trip to the hospital. The medical team determined he had a CNS bleed and infused factor.
The team decided to transport Inderjeet to another hospital with better facilities--a drive through busy city streets in Delhi--but when they arrived, the hospital did not have a bed for him. He had to go back to the first hospital. This proved to be too much. Emergency surgery never happened and limited factor infusions were insufficient to save this boy, who loved art and wanted to be an engineer.
Inderjeet was sponsored for more than six years. In his most recent update to Save One Life, he was grateful to his sponsor and expressed his love for her.
Monday's child is fair of face,
Tuesday's child is full of grace,
Wednesday's child is full of woe,
Thursday's child has far to go,
Friday's child is loving and giving,
Saturday's child works hard for a living,
But the child who is born on the Sabbath day
Is bonnie and blithe and good and gay.