Urgent Fundraising – Yong Ziqing 2.0 (Pyruvate Kinase Deficiency)



When they learned that her mother’s bone marrow was suitable for transplantation to Yong Ziqing, the family seemed to see the light at the end of the tunnel. However, the journey of Ziqing’s bone marrow transplantation was bumpy. When the transplant surgery was just around the corner, the hospital told the parents that they needed RM150,000 for the surgery, which left the distraught parents helpless.

As they did not have anyone to turn to for help, they could only hope that kind-hearted individuals would lend a hand so that Ziqing could undergo surgery soon and get rid of the illness she suffered for seven years. They also hoped she could grow healthily like the other children and welcome her first birthday party soon.

【Her bone marrow transplant surgery was postponed due to a high ferritin index. She must receive medication treatment before going for the surgery】

Ziqing from Ipoh is eight years old this year. She is a Pyruvate Kinase Deficiency (PKD) patient, and she needed to undergo monthly blood transfusions. When the family confirmed that her mother’s bone marrow was a 100% match, they knew that a bone marrow transplant surgery would become the best permanent solution for her.

However, long-term and regular blood transfusions have caused a large amount of ferritin to accumulate in her body. Her 30-year-old mother, Yong Siew Yee, said the highest serum ferritin level in an ordinary person is 200 to 300 nanograms per millilitre (ng/mL) of blood, but Ziqing’s ferritin level exceeded 6,000ng/mL.

“The doctor told us that Ziqing’s situation was not suitable for transplant surgery as it would be very risky, and the chance of rejection would also be high. Besides the threat to the surgery, high ferritin level would also damage her internal organs.”

Therefore, Ziqing has been taking medicines daily for the past 10 months to lower her serum ferritin. Generally, a patient will only use one method to reduce the ferritin level, but Ziqing’s ferritin was too high, so she used two treatment methods at once: oral medication and transfusing a particular medication through her abdomen at night for eight hours and removing it before she went to school.

【The journey to bone marrow transplantation was bumpy. Ziqing’s parents hoped that she could recover soon so that they could hold her a birthday party】

Ziqing had jaundice and low red blood cells at birth. She needed continuous blood transfusions, and her body was always thin and weak. However, the doctor could not identify the root cause of her condition. Her parents decided to send her DNA to a foreign country for testing, and the result confirmed that she was a PKD patient. The doctor did not rule out that her parents were carriers or gene mutations caused it. The doctor told them that a bone marrow transplantation could treat Ziqing. Fortunately, after undergoing another round of tests, the doctor confirmed that her mother’s bone marrow was ideal for her.

Siew Yee said frankly that her daughter’s bone marrow transplant journey was not smooth. Until now, the process of seeking suitable bone marrow has been bumpy, but she did not blame anyone. Siew Yee even felt she was lucky to be a suitable bone marrow donor. She said that during this period, in addition to regular blood transfusions and lowering the daughter’s ferritin level, they also kept trying new medications and underwent various examinations.

She had explained to Ziqing why she needed monthly blood transfusions and the side effects, like hair loss due to the pre-transplantation infusion so that her daughter could have better mental preparation. She also hoped that Ziqing could look at things positively and know that many people were always with her.

“I told her that she should let me go home to clean up the house when she recuperates in the hospital after the surgery. She smiled and told me it didn’t matter if there were spiderwebs at home. If so, she can celebrate Halloween after being discharged from the hospital. I also encouraged her to recover soon so we can throw her a birthday party.”

The parents knew that their daughter loved a lively environment, but they did not hold birthday parties for her as she was weak. To cheer the little girl up, their friends and relatives prepared small gifts for her so that she could feel the motivation and encouragement. The parents also promised her to unwrap a present a day after she got home from the hospital.

【Due to economic factors, her treatment expenses soared to RM150,000. The helpless parents sought assistance again】

In addition to the excessive ferritin level in the blood, the doctor discovered stones in her gallbladder during a recent medical examination. Siew Yee said that upon receiving the medical report, they immediately went to see the doctor at the hospital to check if it would affect the bone marrow transplantation. Fortunately, the doctor said the stones were confined to the gallbladder and would not affect the surgery and reminded them to continue observing her condition in the future.

The parents have been working hard for about a year to prepare for the bone marrow transplantation and the follow-up treatment expenses. They thought that the bad days would come to an end soon. Unexpectedly, they were struck with another piece of bad news. The hospital told them that the economic factors had affected the cost and exchange rate, so the medical expenses soared. They need RM150,000 to complete the surgery and follow-up treatments.

Ziqing’s 37-year-old father, Yong Kai Jie, does online business. He sells household goods on e-commerce platforms. Her mother, Siew Yee, is a housewife who takes care of Ziqing. Although Ziqing attends school like the other children and can participate in sports activities, her mother sometimes receives calls from the teacher that her daughter has nosebleeds and dizziness at school.

As she must send her daughter to the hospital for blood transfusions and follow-up treatments, the mother cannot work. Kai Jie is the family’s sole breadwinner and has to pay for their living expenses and support his elderly parents.

The helpless parents had no other avenue, so they again turned to One Hope Charity for assistance. After several home visits and discussions, One Hope Charity decided to assist Ziqing in raising the RM150,000 she needed to undergo bone marrow transplantation and avoid interruptions in her treatment.

The family agreed to fully authorise One Hope Charity to take charge of the fundraising and collect donations from the well-wishers on their behalf. One Hope Charity will also channel RM10,000 from the “Emergency Medical Reserve Fund” for Ziqing. If you have questions, call One Hope Charity’s hotline at 016-419 2192 or 019-232 2192.

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