There are some undeniable realities that come with adulthood. The universe often plays favorites, unexpected events can alter our lives dramatically, and a mother’s love has the power to create miracles.
This is the journey of Maria Volkov, a mother from Ukraine, who is fighting for her son, Alexei. He is afflicted with a rare and life-threatening condition that can only be treated with a medication costing over two million dollars.
At just one year old, Alexei, like many toddlers, keeps his parents awake at all hours and enjoys creating messes during mealtimes. However, unlike most children his age, he faces the daily challenges of Spinal Muscular Atrophy (SMA), a condition that necessitates extensive rehabilitation sessions multiple times a week.
Understanding Spinal Muscular Atrophy (SMA)
SMA is a genetic disorder that leads to muscle weakness and atrophy, affecting the skeletal muscles responsible for movement. In children, this condition arises when the SMN1 gene is either missing or dysfunctional, preventing the production of survival motor neuron (SMN) protein, crucial for muscle control. Without sufficient SMN protein, essential functions like breathing and speaking become increasingly challenging. SMA is progressive, worsening with age.
Alexei has been diagnosed with SMA Type II, the most prevalent form of the disease. Symptoms typically manifest between six and eighteen months of age, and while children with this type can usually sit and hold their heads up, they often cannot walk. As the disease progresses, they may require additional support, including respiratory assistance, which can be life-threatening.
Maria’s Journey
Maria first noticed something was wrong when Alexei was four months old and exhibited tremors in his limbs. After consulting five specialists, they were told he would likely grow out of it. However, by nine months, it was clear that he lacked strength in his legs, leading to the SMA diagnosis.
Rather than surrender to despair, Maria took action. She researched treatment options and devised a plan. She secured a work permit and relocated to Poland, where she accessed health insurance that covered Spinraza, a medication requiring regular spinal infusions. However, Maria knew this was a temporary solution; her visa wasn’t guaranteed, and she couldn’t stay in Poland indefinitely with Alexei.
Her second plan, which required more time and effort, focused on Zolgensma. This gene therapy, approved by the FDA in 2019, addresses the root cause of SMA by replacing the missing or dysfunctional SMN1 gene, allowing motor neurons to produce the necessary SMN protein. Zolgensma can halt disease progression and maintain existing muscle function, making it a potential lifesaver.
However, the cost is staggering—around $2.125 million for a single dose. In October, their family received an estimate of $2.3 million from University Hospitals Cleveland Medical Center, assuming no complications.
Such a price tag can evoke anger; many families, particularly those without insurance, find it unconscionable to charge this amount for a medication that could save a child’s life. Yet, Maria expresses gratitude that the medication exists at all, acknowledging that had Alexei been born five years earlier, he would have had no hope. Her unwavering love fuels her determination to find a solution.
Fundraising Efforts
Maria started a fundraising campaign in Ukraine. However, due to COVID-19, she was limited to online efforts, and it quickly became apparent that they would need support beyond their home country. A friend in Austria helped set up a GoFundMe campaign, allowing Maria to take her fight global.
Time is of the essence; Zolgensma must be administered before Alexei turns two. Every day counts as motor neurons deteriorate, and the drug cannot reverse any damage already done. Maria estimates they have about ten months left to secure the treatment.
It’s important to note that Zolgensma is not a cure. After receiving the treatment, Alexei will still require ongoing specialized care, including rehabilitation and monitoring by various specialists. However, it represents a chance to save and transform his life, offering hope where there was little before.
To contribute to Alexei’s GoFundMe campaign and help this loving mother in her mission, click here.
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Summary:
Maria Volkov, a Ukrainian mother, is fighting against the odds to secure a life-saving treatment for her son, Alexei, who suffers from Spinal Muscular Atrophy. With Zolgensma costing over two million dollars, Maria has taken her fundraising efforts global, demonstrating a mother’s unwavering love and determination to save her child.