Guest Voice: My son’s journey with severe hemophilia

I am the mother of Lean Archer De Guzman. This is our family’s journey after my son was diagnosed with severe hemophilia.

When Lean was 5 months old, I noticed bruises appearing on his body. It was the first time I’d experienced a condition like this, so I was worried and confused. The bruises seemed unusual for a baby his age. We were overwhelmed with fear and uncertainty, so I decided to take him to the hospital for a checkup.

After several tests, the doctors gave us news that would change our lives forever. Lean had severe hemophilia A, a rare bleeding disorder that prevents the blood from clotting properly. The doctors explained that his case required specialized care and treatment that their hospital could not provide. Because of the rarity and seriousness of his condition, they referred us to a larger hospital.

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We were transferred to Saint Luke’s Medical Center here in the Philippines, where specialists confirmed his diagnosis and helped us understand what severe hemophilia meant. I cried when I learned about his diagnosis because I’d never heard of hemophilia before. I was scared and worried about what would happen to my son, about his safety, and whether we would be able to afford the medical care he needed.

As he grew older, at times he experienced bleeding in his joints, especially after physical activities. It would cause pain and swelling, making it difficult for him to walk and move comfortably.

Eventually, we transferred to the Philippine General Hospital because it was public and would help to reduce the financial burden of treatment. While we were grateful for the care provided there, the hospital was often crowded. As a mother, I constantly worry about Lean being exposed to other illnesses while waiting for treatment. Because of these concerns, we later decided to transfer his care to the University of Santo Tomas Hospital.

Lean Archer De Guzman is now a college student majoring in biology. (Courtesy of Maria Relynda De Guzman)

One of the hardest parts of our journey was when we didn’t have enough factor product at home. Whenever Lean had a bleeding episode, I would immediately start calling hospitals and organizations, friends, and hemophilia mothers to ask for assistance. Those moments were very stressful because treatment needed to be given as quickly as possible. I often had to seek assistance from different government agencies, including even the Office of the President. I spent countless hours processing requests for guarantee letters so that we could maintain an emergency supply of treatment at home.

Many times, I would leave home as early as 3 a.m. just to line up for assistance. The waiting process could take the entire day, and there were occasions when I wouldn’t return home until evening. Because of these responsibilities, I frequently had to miss work, which created additional financial stress for our family. Balancing employment, caregiving, and medical appointments was one of the most difficult challenges I have ever faced.

I still remember carrying folders of medical records and documents from one government office to another while taking care of my son. There were days when I felt exhausted, but whenever I looked at Lean, I reminded myself that I had to keep going for him. I learned to speak up for my child, navigate healthcare systems, and seek every available resource to ensure he received the treatment he needed. The experience also connected us with other families affected by hemophilia, reminding us that we were not alone.

Today, hemophilia remains a part of our daily lives, but it doesn’t define who Lean is. Now 24 years old, he is a student at a public university in Manila. He is working on an education degree with a major in biology. He has shown incredible strength throughout his journey. Looking back, the diagnosis was one of the most frightening moments of my life, but it also revealed that our family is resilient.

I want other parents facing a rare disease diagnosis to know that the road ahead may be difficult, but you are stronger than you realize. Ask questions, seek support, and never stop advocating for your child. Every challenge is worth facing when it means giving your child the opportunity to live a healthier and fuller life.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.