Description
Case No. 1708: A newborn baby girl with a congenital illness is suffering greatly and urgently needs donations to cover ongoing medical expenses and save her life.
Nur Humaira, who is only two months old, suffers from dystonic movements and frequent seizures that require constant and careful medical attention to prevent any life-threatening incidents. However, her father, a ride-hailing driver, is struggling to support his family of five and cannot afford the RM10,000 budget for his daughter’s medical care. He is appealing to kind-hearted people for donations.
According to the results of magnetic resonance imaging (MRI) conducted on the baby’s brain, her illness is related to her family’s genetic makeup. Therefore, pediatricians recommend genetic testing or genome sequencing abroad, as the relevant technology is not yet available in the country. The Ministry of Health (KKM) will closely monitor the entire process. The baby is waiting for the help of kind-hearted people to relieve her suffering as soon as possible.
Nur Humaira Azzahra Binti Jamaluddi is a newly born baby girl whose vision has not yet fully developed. She cannot even see her parents’ faces clearly and is suffering from pain, which is heartbreaking for her parents. Every birth of a baby is the greatest joy and expectation for parents, who are happy to welcome them and look forward to their growth. Nur Humaira’s parents are no exception, but they noticed that their baby girl had physical problems just two days after her birth.
Due to frequent fevers, whole-body muscle cramps, and continuous abnormal head movements and eye tremors, Nur Humaira was sent to the hospital for examination by her parents when she was two months old. She was subsequently diagnosed with dystonic movement/intractable seizure secondary to leukodystrophy and also suffers from gastroesophageal reflux disease (GERD), which causes feeding issues.
Nur Humaira needs comprehensive care to prevent developmental disorders that could lead to paralysis or even the loss of life. Apart from continuing medical examinations and medication, doctors say that Nur Humaira may need the assistance of a home oxygen machine and suction machine in the future. They also suggest that she needs a genetic blood test, which her low-income father cannot afford.
Jamaluddi, Nur Humaira’s father, is a ride-hailing driver, and his wife cannot work as she needs to take care of their child. They come from Sabah. They have two other sons, aged 13 and 15, who do not suffer from any congenital diseases. Due to their unstable income, they are living with Jamaluddi’s brother, who also struggles financially. His brother is not able to afford the medical expenses of the baby girl too. In desperation and helpless, they have turned to Da Ai to organize a crowdfunding to raise RM10,000 to cover Nur Humaira’s follow-up care and genetic testing costs.
We are currently handling this crowdfunding campaign and appeal to kind-hearted people nationwide to help. Kindly share this message so that more people can learn about Nur Humaira’s situation and help her overcome her difficulties. Thank you.
【Update-18 May 2023】
Case No. 1708: Thank you to all those who have kindly donated RM10,000 for the follow-up care of our newborn baby girl, Nur Humaira.
The parents of the baby are very grateful for the donations to continue their daughter’s care. We wish Nur Humaira a speedy recovery.
We are very grateful for the generous donations from people all over the country. We wish you all happiness and success in all your endeavors.
The moment a child was born, parents experience great joy and excitement as they welcome them into the world and anticipate watching them grow. Nur Humaira Azzahra Binti Jamaluddi’s parents felt the same way, but two days after the birth of their daughter, they became aware that she was having issues with her physical reactions.
She was diagnosed with “Dystonic movement/Intractable seizure secondary to Leukodystrophy” when she was two months old after her parents took her to the hospital for testing due to frequent fever and muscle cramps, abnormal continuous head bobbing, and nystagmus.) Additionally, the little girl has gastro-oesophageal reflux syndrome (GERD), which makes eating challenging.
Furthermore, the results of the baby’s brain’s MRI test demonstrate that the pain is linked to a family gene. The baby’s blood should be transferred overseas for genetic testing or sequencing because the technology is not yet accessible there, and the Ministry of Health will closely oversee the procedure. This is the paediatrician’s recommendation.
To prevent any developmental problems that could cause paralysis or, more potentially, death, Nur Humaira will require intensive care. The doctor advised that in addition to ongoing examinations and medicine, the baby would someday require help from a home oxygen and suction equipment. He also suggested that blood be obtained and sent overseas for genetic testing, all of which the father could not afford on his limited wage.
The father, Jamaluddi, works as an online cab driver and already struggles to support his family of five. He is unable to pay for his daughter’s care.
The two boys of Jamaluddi are 13 and 15 years old. He already struggles to support his family of five, and his wife cannot work since she must watch the kids round-the-clock. They are Sabah natives.
Due to erratic income, Jamaluddi’s family is temporarily housed with her brother, who is also having financial difficulties and cannot afford to assist him with the costs associated with the baby girl. They come to our center because they had no one else to turn to and requested us to raise money for them.
Thanks to the kindness of people all around the nation, the crowdfunding effort has reached its goal. We are appreciate you.
