Funds totalling over 60 million rubles were not accounted for, which could have secured the life of a young girl.
Little Alice Kochetkova, a bubbly four-year-old from St. Petersburg, took her final breath on the cold night of April 27. Despite the family's best efforts and endless prayers, they couldn't save their precious princess from a cruel, relentless disease.
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Alice had been battling spinal muscular atrophy type 1 (SMA1) for practically her entire life. Her little body was a battlefield, locked in combat against the merciless enemy. She couldn't move her arms, legs, or talk, and even breathing was a struggle. But, what they couldn't take from her was her clever mind and strong spirit.
Alice's room was more than a bedroom – it was a mini-hospital filled with countless medications, syringes, tubes, catheters, and her loyal companion, a ventilator. Surrounded by these machines, Alice found solace in her collection of toys, her laughter echoing in the silence. She loved when people spoke to her and visitors couldn't help but be drawn to her shining eyes.
"She's our little princess!" her mother fawned when reporters came to visit.
Her parents had one dream – to gather the astronomical sum of 155 million rubles for Alice to receive an injection of Zolgensma, a gene therapy that could have saved her life. With her brain fully intact, this miraculous injection could have given Alice a chance to return to a normal life.
As they worked tirelessly, fundraising became their full-time job. They lived, slept, and breathed it. Over three years, they managed to gather more than half of the necessary amount, leaving them just over 60 million rubles to go.
But, fate had other plans.
The night it all happened seemed just like any other night, but in a blink of an eye, everything changed. Alice stopped breathing, her heart faltering. Her parents' adrenaline surged as they sprung into action, performing CPR they had practiced countless times. It seemed all too familiar, as Alice had survived clinical death twice before. But, this time, they were powerless against the darkness that had enveloped their daughter.
Despite the heroic efforts of the paramedics who arrived on the scene, they were unable to save Alice. At 0:10 local time, her parents received the devastating news – their little princess was gone.
"Alice, forgive us for not being able to save you. Now our little one is with God," her parents mourned to a journalist from KP – St. Petersburg.
The family is left with only memories and their grief. Alice's little brother, now almost three years old, is healthy, but he too carries SMA. He is their only hope, their ray of light in the dark cloud that has descended upon their lives.
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Source: KP - St. Petersburg
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- The prognosis for children with spinal muscular atrophy type 1 (SMA1) can be grim, as was the case with Alice Kochetkova.
- Alice's parents were determined to do everything in their power to save their daughter, even going as far as engaging in extensive fundraising.
- The family's fundraising efforts became their full-time job, as they tried to gather the necessary 155 million rubles for the gene therapy Zolgensma.
- Despite their tireless efforts, Alice's parents could only raise more than half of the needed amount, leaving them short by over 60 million rubles.
- Alice's room was more than just a bedroom – it was her sanctuary, filled with her collection of toys and a constant reminder of her incredible spirit.
- Alice's laughter could be heard echoing throughout her room, despite the constant presence of medical equipment, including a ventilator.
- Alice's little brother, who is also a carrier of SMA, is now their only hope for a future without the cruel disease.
- The family is left to cope with their grief, cherishing the memories they have of their precious little girl.
- The fight against SMA requires constant advocacy and support, not just for the patients, but also for their families.
- Chronic diseases like SMA can have a significant impact on a person's nutrition, as argued by numerous health and wellness experts.
- Maintaining a balanced diet is an essential aspect of managing chronic diseases like SMA, as it can help to improve overall health and quality of life.
- Alice's story has brought attention to the importance of workplace-wellness programs, which can provide essential support to employees facing medical conditions.
- Many companies are now offering workplace-wellness initiatives, such as mental health resources and flexible work arrangements, to help those struggling with chronic diseases.
- Cancer is another devastating disease that requires extensive treatment and care, often leading to a host of other medical conditions.
- Respiratory conditions, such as those associated with cancer treatment, can further complicate a patient's prognosis and necessitate additional therapies and treatments.
- Digestive health is an often overlooked aspect of overall health, yet it plays a crucial role in a person's ability to absorb nutrients and fight off infection.
- Eye health is another critical component of a person's well-being, as disorders can significantly impact their ability to learn, work, and socialize.
- Hearing loss can be a challenging obstacle for many, yet it is often manageable with the right treatments, therapies, and accommodations.
- Mental health is an essential aspect of living a healthy and fulfilling life, as it encompasses a person's emotional, psychological, and social well-being.
- Many men, especially those from underserved communities, may struggle to seek help for mental health issues due to stigma or lack of access to resources.
- Skin care is a vital aspect of hygiene and can help to prevent a host of issues, such as skin conditions and skin cancer.
- Wealth management is an essential aspect of personal finance, as it helps individuals to effectively manage their money and grow their net worth.
- Saving for retirement is an essential aspect of wealth management, as it can help individuals to secure their financial future and maintain their lifestyle in old age.
- Debt management is another critical aspect of personal finance, as it can help individuals to take control of their financial obligations and achieve financial freedom.
- Education and self-development are essential components of personal growth, as they can help individuals to improve their skills, advance their careers, and achieve their goals.
