“Hannah, my first child, has been suffering from epilepsy, brain atrophy, cerebral palsy, brain calcification, Rett syndrome, and pale pupils for 2 years. To recover, Hannah has been advised to take regular medication by her doctor. She also needs therapy for her motor skills, as without it, her body will become weaker and more rigid.” – Fadhlan’s story.

Initially, when Hannah was 7 months old, she experienced seizures without fever dozens of times. Doctors diagnosed epilepsy, and Hannah frequently had to be hospitalized. Her body couldn’t tolerate medication doses, leading to a coma due to sepsis pneumonia and decreased albumin levels. Hannah has been in the ICU four times due to pneumonia and epilepsy, turning blue and losing consciousness. Just last month, she spent 5 days in the ICU unconscious due to low platelets and pneumonia. The seizures persist, occurring 1-4 times daily, making her restless and crying in pain. During seizures, her body turns blue, and if it lasts more than 5 minutes, we rush her to the hospital.

After examinations, my child was diagnosed with epilepsy, brain atrophy, cerebral palsy, brain calcification, Rett syndrome, and pale pupils. The treatments so far include MRI, CT scans, thorax examination, EEG, lab tests, and eye nerve checks at Wulan Windy Hospital, then referral to Murni Teguh Hospital and currently at Adam Malik Hospital.

At the age of 3, Hannah has been advised to take regular medication by her doctor and undergo motor skills therapy. If not done promptly, her body will become weaker and more rigid.

To cover the treatment, we need around $120 per month for motor skills therapy. However, the treatment costs rely on living with my parents and their support. My wife has stopped working for several months because Hannah is frequently ill.

“When we found out about our child’s epilepsy diagnosis and the lengthy treatment, we had to sell our motorcycle and jewelry. At that time, Hannah didn’t have government insurance. Moreover, my wife’s insurance had arrears, so we had to borrow money from our parents.” – Fadhlan’s story.

Let alone the costs of further treatment, our family’s living expenses depend solely on my income. After being laid off a few months ago, my wife also started a small stall. Although I’ve been actively searching for a job, there haven’t been any calls. Currently, the transportation costs to the hospital are covered by our parents’ assistance, but it’s still not enough for our child’s treatment.

“Hopefully, Hannah can recover and grow normally like other children, being able to sit, walk, speak, go to school, and pursue her dreams and future life.” – Fadhlan’s story.

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