Help bring Palliative Care to Indonesia's children

by Yayasan Rumah Rachel ('Rachel House')
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Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children

Project Report | Nov 21, 2024
When Lupus Brings the Storm, Love Lights the Way

By Moza Adilen | Communications & Fundraising Officer

Nadya is safely guided with care and compassion
Nadya is safely guided with care and compassion

When Nurse Dadan from Rachel House first met Nadya*, a spirited teenager facing Systemic Lupus Erythematosus (SLE), he saw a girl weighed down by an immense struggle. Diagnosed in January 2023, Nadya’s condition had declined rapidly by May 2024. The inflammation caused by her illness began to affect her brain, trigerring episodes of delirium and haunting hallucinations. Her once bright days now clouded by pain, fatigue, and a deep sense of guilt as she became increasingly dependent on her family. Watching her wrestle with the fear of being a burden - a fear that no teenager should bear— was heartbreaking.

Determined to make a difference, Nurse Dadan and Rachel House stepped in with unwavering dedication. They focused on monitoring Nadya’s medication, managing her pain, and assisting with physiotherapy to help her regain some independence. Recognizing the toll SLE had taken on her mental health, they worked tirelessly to address her neuropsychiatric symptoms, bringing moments of calm to her turbulent days. With her condition at risk of life-threatening complications, every effort was vital. Through it all, Dadan’s compassionate care became a source of hope for Nadya, inspiring her to face each challenge with courage.

For Nadya, life with SLE has been a relentless battle. Once an active and vibrant teenager, she now grapples with sleepless nights, feelings of isolation, and the sorrow of losing the carefree life she once knew. She misses her friends, her school, and the laughter that once filled her days. The physical and emotional toll of flare-ups and treatments often leaves her overwhelmed, and on her hardest days, she feels like a burden to her family. Yet, with Rachel House by her side, Nadya is learning to accept help and draw strength from the love and care that surround her.

Nadya’s parents have faced their own heartbreak on this journey. Watching their child endure so much pain has been a constant source of worry and exhaustion. Sleepless nights, frequent hospital visits, and the financial strain of living far from a major medical center have tested their resilience. At times, they felt on the verge of losing hope, uncertain how they would continue.

Rachel House has been their lifeline. Nurse Dadan’s consistent care and committed advocacy ensure Nadya gets the treatment she needs, while Rachel House supports the family with essential supplies like diapers, nutrient-rich food, and transportation aid to ease the burden of hospital visits. For Nadya’s parents, Rachel House brought more than medical care – they have provided emotional and practical support that they desperately needed. “Without Nurse Dadan and Rachel House, we don’t know how we would have managed,” they share. “They have been there for us in so many ways that we can never thank them enough for.”

Through the dedication of Rachel House, Nadya and her family continue to find strength and hope amidst unimaginable challenges. Together, they are redefining what it means to live with SLE, embracing each moment with hope, resilience and the power of compassionate care.

 

 

*Name changed for privacy

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Organization Information

Yayasan Rumah Rachel ('Rachel House')

Location: Jakarta, DKI Jakarta - Indonesia
Website:
Project Leader:
Lynna Chandra
Jakarta , Indonesia
$181,134 raised of $250,000 goal
 
1,081 donations
$68,866 to go
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