My name is Vijay Maurya, and I am from India. My eldest son, Ansh, was born in March 2010. He had a regular early childhood and did well in his studies. In 2017, my youngest son, Amol, was born.

In 2018, Ansh began to have difficulty in school. He was frequently unwell, and he demonstrated changes in his skin color. We changed schools and consulted with a doctor who could not determine the cause. Suddenly, in May 2019, he had some hearing and behavioral changes and was diagnosed with ALD by CT. We were given no further information or options for treatment. We consulted doctors in New Delhi, where an MRI was performed. Ansh’s LOES score was too high to qualify for a transplant. He was also treated for adrenal insufficiency. Ansh’s condition continued to worsen, and he fell into a coma and he passed away in July 2021.

Our youngest son, Amol, has also tested positive for ALD. He is being monitored by MRI and treated for adrenal insufficiency. His maternal uncle, Mithlesh, has been diagnosed with AMN and struggles with severe urinary bladder issues and depression.  Thankfully, his maternal Aunt, Sapna, has tested negative for ALD. We had hoped for another child with a pre-genetic diagnosis, but the same mutation was present, and we had to terminate the pregnancy. In India, there is a lack of awareness about ALD, no financial assistance, and no newborn screening.

I want to send a message of hope to all. We are not alone. We are family.

Together, we can overcome this disease. Thank you to all of you.