The Race Against Time to Save a Special Boy from a Rare Disease
In a heart-wrenching battle against time, one-and-a-half-year-old Osher Asulin has been diagnosed with the rare and deadly Adrenoleukodystrophy (ALD) disease. This devastating condition, if left untreated, spells certain death. Osher’s desperate parents, Liel and Roy, have embarked on a journey to the United States, seeking a lifeline for their son, as Israel lacks the medical expertise and facilities capable to offer the necessary assistance.
ALD is a rare disease that affects a mere 3% of the global population. It is an inherited disorder that mercilessly assaults the nervous system. Its primary victims are young males, and its progression unfolds in agonizing stages. Disturbingly, a patient may carry this insidious disease for considerable time while remaining oblivious to its presence until specific blood tests are conducted.
The sinister nature of ALD lies in its impact on the body’s ability to break down long-chain fatty acids, which results in a harmful accumulation of them. This wreaks havoc on crucial components of the body such as the adrenal gland and white matter in the brain, and ultimately culminates in severe muscle atrophy, leading to an untimely demise.
The initial signs of the neurological deterioration of ALD often manifest as attention and hearing disorders. As the disease advances, it robs its victims of their hearing and speech abilities. Subsequently, it inflicts profound muscle paralysis, rendering the afflicted individual unable to move their face and a subsequent downward spiral.
Osher’s story is not just an affecting narrative; it’s a call to action. The urgency to find a solution underscores the critical need for heightened awareness, research, and resources to combat a rare disease like ALD. As Osher fights for his life, his journey serves as a stark reminder of the ongoing battle against time with such rare and harrowing adversaries.
Out of Every 42,000 Men, One Will Suffer from ALD
Osher’s parents currently find themselves in a small motel in New Jersey, alongside their younger daughter, Orin, desperately seeking help from kind-hearted individuals in the local Jewish community. In the coming week, they plan to move to yet another hotel, this time in Brooklyn, in an attempt to find assistance. Despite their challenging financial situation and the ongoing struggles in their homeland, they have been unable to find a savior, even with the internet campaign they launched.
Recently, the family received distressing news from Osher’s doctor. Their son has also developed Addison’s disease, which attacks the kidneys. In its advanced stages, Addison’s causes a frightening 75% of cases to trigger a severe ALD outbreak. Osher is currently undergoing intensive treatments, with regular blood transfusions and steroid administration to control the disease and prevent outbreaks. To fully recover, little Osher requires an innovative genetic treatment unavailable in Israel but offered at a hospital in Boston. The good news is that this genetic treatment boasts an incredible 97% success rate. However, it comes with the staggering news that the cost of the treatment amounts to $2.5 million—a daunting sum, especially for a young Israeli couple in their mid-20s.
Osher’s parents shared with me how the entire ordeal blindsided them completely: “Throughout the pregnancy, everything seemed normal, and the doctors assured us—by mistake—that we were having a healthy daughter, so we had no concerns about ALD, a disease that primarily affects boys. However, after birth, comprehensive tests, including an Exum test, after our approval, revealed that Osher tested positive for ALD. The treatment he needs is gene replacement, a process that replaces a faulty gene with a healthy one. If detected in time, it can save him. But when we realized the cost, darkness descended upon us. Initially, the doctors suggested that researchers might fund the treatment, considering it’s a rare case, especially in Israel. Unfortunately, that didn’t happen. Meanwhile, Osher continues to undergo painful and costly tests, requiring an MRI every six months.” Royold me that it’s not easy to cope during this period: “Doctors give him steroids to stabilize him and prevent deterioration, but he’s only a year and a half old. These medications affect him and his mood. They make him irritable and nervous, and he constantly needs a lot of attention.”
Please help Osher🙏
