Baby Esther’s journey as a baby with rare condition has been a difficult one right from the start. Minutes after being born, she stopped breathing, and her ability to breathe on her own remains uncertain.
She was diagnosed with a rare genetic condition that affects her jaw, tongue, and upper airway, making feeding and breathing a daily struggle.
In the face of uncertainty, her parents, Nilar Aye and Thet Paing Tun, have shown remarkable resilience and hope, working tirelessly to ensure Esther receives the care she needs as a baby with rare condition.
Baby Esther’s Charming Resilience Amidst Daily Struggles as the Baby with Rare Condition
Source: GIVE.asia
Baby Esther in her home, a rented bedroom in Aljunied, reveals the challenges the family faces on a daily basis. Medical equipment and machinery dominate the space, with an oxygen concentrator and a ventilator among the essential items.
Nilar explains that while Esther used to require the ventilator mask constantly, she now needs it mainly during sleep due to drops in oxygen levels.
At just 14 months old, Esther’s future remains uncertain, dependent on her response to treatment. Despite her condition, Esther’s sociable nature shines through, captivating those around her with her curious and chubby-cheeked presence.
Parental Perseverance: Nilar and Thet Paing Tun’s Unwavering Commitment
Nilar, who quit her job as an assistant in a coffee shop to care for Esther full-time, and Thet Paing Tun, who works extra shifts to support their daughter’s medical needs, exemplify unwavering persistence in the face of uncertainty.
Their early days were filled with fear, as Esther remained in the neonatal intensive care unit (NICU). The couple lived in constant worry, with Thet Paing Tun finding solace in private moments to express his emotions. But with each passing day, Esther grows stronger, owing to Nilar’s unwavering determination.
Nilar’s day begins at 3:30 am, starting with tube feeding, medication administration, and hours of physiotherapy. These exercises, while physically challenging for Esther and emotionally taxing for Nilar, have proven effective in strengthening Esther’s joints and preventing muscle stiffness.
Nilar hopes to return to work in the future, once Esther’s health improves, as she finds joy in working at coffee shops and engaging in cooking. Their resilience and determination inspire hope amidst the difficulties they face.
Navigating Financial Hurdles: Striving for Esther’s Care Amidst Mounting Costs
The financial burden adds another layer of complexity to Esther’s journey.
As Nilar and Paing are originally from Myanmar, Esther’s seven-month NICU stay costs over S$400,000, a staggering sum compared to their modest income. The couple has managed to raise about S$180,000 through a crowdfunding platform, but they still face a shortfall of S$280,000.
To alleviate some of the financial strain, Paing’s employer is assisting them with PR applications, which may provide a stable home for Esther. They also receive support from HCA Hospice’s “Star Pals” program, which offers financial aid and medical supplies. Paing continues to work tirelessly, often unable to attend interviews due to work commitments.
A Miraculous Journey: Baby Esther’s Triumph over Adversity
Source: GIVE.asia
Esther’s journey from her fragile state at birth to her current stage has been nothing short of miraculous. Born premature, her lungs were underdeveloped, and she stopped breathing shortly after her birth.
Rushed to the NICU, Esther spent the next seven months there, with Nilar pumping breast milk tirelessly, hoping for her daughter’s recovery. The turning point came when Esther was around seven months old, and doctors attempted to extubate her. After two failed attempts, they gave her one final chance.
Miraculously, Esther started breathing on her own, defying the odds and filling her parents’ hearts with joy.
Unconditional Love and Unwavering Hope for a Baby with Rare Condition
Hearing the story of Nilar and Esther together, their bond is evident. Despite the challenges they face, they find joy in the simple moments of everyday life.
Nilar cherishes each interaction with Esther, knowing that her future is uncertain and that she may never experience the same milestones as other children. However, she remains hopeful that Esther will grow stronger, learn to walk, talk, and become more independent.
While the road ahead may seem daunting, Nilar approaches each day with resilience and unconditional love.
In the end, what matters most is the hope that Esther continues to live. As this story unfolds, we are reminded of the power of love and the strength of parents who persevere in the face of adversity.
Baby Esther’s journey serves as an inspiration, reminding us to cherish every moment and hold on to hope, no matter the circumstances.
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