Rare journeys of love

Coping & Resilience

By Nur Farhan Bin Aini

2011
PUSTAKA NEGERI SARAWAK
148 pages

Sinopsis

This book shares real-life stories of Malaysian families living with rare disorders, which affect only a small number of people. Some babies are born with serious health conditions, and many families must learn to cope with these challenges. The book tells 10 touching stories from parents and patients, showing their struggles, fears, and love as they deal with daily life. Despite the difficulties, their journeys are also full of hope and strength. Overall, the book helps readers understand rare disorders better and encourages kindness and support for those going through similar experiences.

Nombor Buku	616.092
Tempat Terbitan	Selangor
Penerbit	Persatuan Penyakit Jarang Jumpa Malaysia
Ukuran Tinggi Buku	9789671029701

Sasaran Biblioterapi

Bil	Sasaran	Bukti Isi Buku
1	Parents and Primary Caregivers of Children with Special Needs	Proof 1: The book documents the overwhelming emotional process of receiving a rare diagnosis, capturing the raw transition from "tears and fears" to finding active solutions. Proof 2: The anthology functions as a direct manual of hope, providing caregivers with shared strategies on handling daily physical challenges and navigating tertiary healthcare systems.
2	Medical Professionals, Policymakers, and Healthcare Advocates	Proof 1: The text explicitly outlines the systemic grievances families experience regarding initial misdiagnoses and the steep financial costs of specialized treatment. Proof 2: It serves as an advocacy tool designed to "sensitise all to the needs of fellow Malaysians," calling directly for policy changes and affordable treatment avenues.

Perkembangan Diri

Bil	Perkembangan	Bukti Isi Buku
1	Cultivating Psychological Fortitude Amid Chronic Stress	The families demonstrate profound internal growth by consciously choosing optimism over despair. The book highlights how parents shift from feeling completely isolated by an unknown illness to building psychological endurance, learning to celebrate incremental physical milestones instead of mourning typical childhood progressions.
2	Finding Purpose Through Adversity and Vulnerability	Self-development is shown as parents step entirely out of their comfort zones to become public advocates. By sharing their personal vulnerabilities, they transform their private family tragedies into a collective mission to raise public awareness, discovering a renewed sense of personal identity and community purpose.
3	Shifting from Isolation to Proactive Interdependence	The narrative tracks the social maturity of the storytellers as they actively dismantle social taboos. Instead of withdrawing into societal isolation out of fear of judgment, the individuals grow by forming cooperative alliances, building grassroot support groups, and helping other families access vital rehabilitative resources.