Urgent Fundraising – Evonne To 2.0 (Chromosomal Defect)



Four-year-old Evonne To has been frequently suffering from fever, cough, and excessive phlegm since birth. More severely, she experiences seizures, asthma, intubation for emergency treatment, and bacterial infections. After numerous tests, it was confirmed that she has a chromosomal defect leading to symptomatic genetic epilepsy, immune system issues, and gastroesophageal reflux disease (GERD).

Evonne, from Jitra, Kedah, often goes in and out of the hospital with her parents by her side. She requires long-term use of a Bilevel Positive Airway Pressure (BIPAP) machine. Despite being physically and mentally exhausted, her parents are encouraged by her gradually stabilizing condition and hope for the day she can be free from the breathing machine.

However, the medical supplies she needs, including regularly replaced tubes, a percutaneous endoscopic gastrostomy (PEG) tube, special formula milk, diapers, and medications, result in significant monthly expenses. Therefore, they sought assistance from our foundation, which has decided to raise RM80,000 to help them through this difficult period."

【Hospital has become a second home for Evonne To and her mother. At one point, Evonne had a seizure and was hospitalized for over a month. They also have appointments in 11 different departments at the central hospital】

During the pregnancy, the mother's prenatal checkups indicated everything was normal. However, after the baby was born, she frequently suffered from fever, cough, and excessive phlegm. Tests revealed a bacterial infection in her lungs, which was managed with medication. At eight months old, Evonne To suddenly had a seizure and experienced severe asthma, requiring emergency intubation.

Evonne has a chromosomal defect that has led to multiple developmental delays, central hypotonia, tracheomalacia, severe gastroesophageal reflux disease, epilepsy, immune deficiency, and hypothyroidism.

At her worst, Evonne experienced frequent seizures and had to be hospitalized for one to two months. Additionally, she underwent various tests and consultations in different departments, including neurology, pediatrics, ophthalmology, ENT, physical therapy, speech therapy, occupational therapy, dentistry, and respiratory medicine. Genetic testing was also arranged by the doctors.

After four years, Evonne’s condition has gradually improved. Although she needs to use a BIPAP machine long-term and receives feedings and medications through a percutaneous endoscopic gastrostomy (PEG) tube, her parents have learned to manage her care. Her mother has become strong and skilled in caring for her, including hygiene maintenance and tube replacement. Her father has also learned how to assist with feedings and other tasks, sharing the workload with his wife.

Evonne still cannot walk or stand, and she receives intravenous immunoglobulin (IVIG) therapy and physical therapy every three weeks. Fortunately, their efforts have paid off, and her mother is pleased to see that Evonne’s neck has gained strength and she has learned to roll over. She now moves her limbs on her own and responds to her parents' calls.

Despite facing numerous challenges, the couple remains steadfast in caring for their only daughter. They are dedicated to providing her with the best care and encouraging her to learn and try various activities.

Evonne requires various medical supplies. To avoid bacterial infections, her tracheostomy and PEG tubes need to be replaced every two weeks, along with special formula milk, diapers, and medications. The substantial medical expenses have overwhelmed the family.

Her father (38 years old), works as a lorry driver with a monthly salary of RM2,500. Her mother (30 years old), was a clerk before marriage and has since become a housewife to care for their daughter full-time.

After reviewing their case, One Hope Charity has decided to help raise funds for Evonne To’s medical expenses. The family has agreed to entrust the fundraising activity entirely to One Hope Charity, which will also manage the donations. For any inquiries, please contact our hotline at 04-539 9212, 016-4192 192, 019-2322 192, or 018-911 4192."

GOAL achieved thanks for all your donations