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Hi, this is my sweet nephew Samuel, mostly known as "Samu". He is a sweet boy who was recently diagnosed and is battling Adrenoleukodystrophy, or ALD. Recently it has been discovered that his ALD is progressing very quickly. Though he was diagnosed in July, he now has diminished hearing and loss of eye muscle control.
Adrenoleukodystrophy is a rare and life-threatening genetic disease that can ravage cognitive, mobility and physical functions and has no cure. However, stem cell transplantation may stop the progression of ALD if done when neurological symptoms first appear. Doctors will focus on relieving symptoms and slowing the disease's progression and now is the time for action.
According to the U.S. National Library of Medicine, the prevalence of ALD is 1 in 20,000 individuals worldwide. Because this is a very rare disease he will need to be treated by a specialist. Unfortunately, Samu and his parents moved to the USA a little less than 5 years ago. He is currently uninsured and waiting on Medicaid to be approved. His parents have given up their employment to become full time caregivers with around-the-clock care, love and support and are currently living on their savings.
My hope is that we can raise enough so that Samu's family doesn't need to sell off their entire life to support their son and get him the medical treatment he needs. Please donate whatever you can spare so this family can stay together and have one less stressor during these difficult times.
Thank you in advance for helping us help Samu and his family start the treatment he needs. If you'd like to help contribute but don't want to use this platform, please reach out to me.
God has been good and has taken care of Samu at all times and although he is not as we wish (yet), we know that he will receive complete healing in Jesus' name, because of a promise that the Almighty gave him. The processes right now are difficult, but we will continue to trust and have unbreakable faith in Jehovah-Rapha!
Thank you again,
Margie Rodriguez
What is Adrenoleukodystrophy (ALD)?
Adrenoleukodystrophy (ALD) is a rare genetic condition that causes the buildup of very long chain fatty acids (VLCFAs) in the brain. When VLCFAs accumulate, they destroy the protective myelin sheath around nerve cells, responsible for brain function.
Check out the link below to learn more about ALD: