In life, I’ve come to accept a few fundamental truths. Firstly, the universe can be quite unjust. Secondly, unexpected events can occur—sometimes for the better, sometimes not. And lastly, a mother’s love can create miracles.
This is the journey of Maria Ivanova, a mother from Ukraine, who is determined to perform a miracle for her son, Vanya. He is battling a rare, life-threatening condition that can only be treated with an astonishingly expensive medication exceeding two million dollars.
Vanya, just a year old, shares the typical antics of a toddler—keeping his parents awake all night and creating messes during mealtime. Yet, unlike most children his age, Vanya endures the pain of teething while managing a serious illness known as Spinal Muscular Atrophy (SMA). This condition necessitates rehabilitation sessions lasting one to three hours, five times a week.
Understanding Spinal Muscular Atrophy (SMA)
SMA is a genetic disorder that results in muscular weakness and wasting, mainly affecting skeletal muscles. In children like Vanya, the SMN1 gene is either absent or dysfunctional, preventing sufficient production of the survival motor neuron (SMN) protein, which is essential for muscle movement. Without this protein, basic activities like breathing, speaking, and lifting one’s head become increasingly challenging. The condition is progressive and deteriorates with age.
Vanya has SMA Type II, which is the most prevalent form. The spectrum ranges from Type 0, the most severe, often leading to fatal outcomes in infancy, to Type IV, which manifests in early adulthood. Symptoms for Type II typically emerge between six and eighteen months, with affected children generally able to sit and hold their heads up, but unable to walk or run. As the condition progresses, many require additional support, including permanent breathing assistance.
Vanya’s symptoms first appeared when he was about four and a half months old, with his family noticing a tremor in his limbs. After consultations with five specialists, they were told he would outgrow these tremors. However, by nine and a half months, the lack of strength in his legs led to a definitive SMA diagnosis.
A Mother’s Determination
Maria was heartbroken but resolute. She dove into research, strategizing her next steps. She quickly obtained a work permit and moved to Poland, securing health insurance for Spinraza, a medication for SMA requiring regular spinal infusions. However, she soon recognized that this was a temporary solution, as her work visa was not guaranteed.
Her second plan, involving a groundbreaking drug called Zolgensma, required more time but offered the potential for a lasting miracle. Zolgensma, approved by the FDA in 2019, uniquely addresses the genetic root cause of SMA by replacing the missing or malfunctioning SMN1 gene. This gene instructs motor neuron cells to produce the vital SMN protein, halting the progression of the disease. It’s a transformative treatment, though exceedingly costly, priced at approximately $2.125 million for a single dose.
In October, Maria received a hospital estimate of $2.3 million from University Hospitals Cleveland Medical Center, assuming no complications. The staggering cost of two million dollars is infuriating; many families, particularly those without insurance, find such expenses unconscionable. Yet, Maria remains grateful that the treatment exists, lamenting that had Vanya been born five years earlier, he would have had no hope. For her, there is hope and the unwavering belief that a mother’s love can indeed create miracles.
Fundraising for a Miracle
Initially, Maria began fundraising in Ukraine, but COVID-19 limited her options to online efforts. Realizing that local support wouldn’t suffice, a friend in Austria set up a GoFundMe campaign, enabling Maria to take her fight to a global audience. A mother’s determination knows no bounds.
Time is critical; Zolgensma must be administered before a child turns two. Every day counts as motor neuron cells deteriorate in SMA patients, and the drug cannot reverse any damage already inflicted. Maria estimates that her family has about ten months to secure the necessary funds.
While Zolgensma is not a cure, it is a life-changing treatment that requires ongoing specialized care, including rehabilitation and continuous monitoring by various specialists. It represents a glimmer of hope for a mother whose love knows no limits.
For those who wish to help, you can contribute to Vanya’s GoFundMe campaign here.
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Potential Search Queries:
- How to treat spinal muscular atrophy?
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- What is SMA Type II?
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Summary:
Maria Ivanova, a mother from Ukraine, is leading a global effort to secure a life-saving treatment for her son, Vanya, who suffers from spinal muscular atrophy. After navigating a complex medical landscape and encountering exorbitant treatment costs, she has turned to fundraising efforts that extend beyond her home country, driven by the urgency of time and the unwavering hope a mother has for her child’s future.