Mukhtar Maksat Merhatuly

Help Bring Maksat Back to Life! A 3-Year-Old Boy is in Critical Condition!

 

Maksat's family is facing an incredibly difficult situation, and his mother is reaching out for your support. They are a kind, humble family with two young children. Maksat, the older sibling, turned 3 years old on February 26, 2025, while his younger brother Madiyar celebrated his 1st birthday on January 26.

Maksat has been diagnosed with a rare and severe form of leukaemia, and he urgently needs your assistance. Time is of the essence!
 

Maksatik is a calm and disciplined little boy, known as a peacemaker. He does not allow anyone to speak to each other in raised voices, as he dislikes loud conversations. Everything in his small world should be peaceful and friendly. Despite being only three years old, he plays very carefully and has never broken a single toy. When one of his toys had a broken leg, he became quite worried and carried it around in his arms, gently stroking it and telling everyone that it was hurting. Maksatik loves pets, especially cows. He has an entire collection of them and can spend all day playing: building them houses, feeding them, and giving them water.

 

A terrible chapter in his life began last April. The boy's temperature spiked, and the joints in his legs hurt so badly that he refused to walk. His family took him to the emergency room at CMiR, where doctors diagnosed him with a lingering virus that was causing complications in his joints. After being prescribed antiviral medication, Maksat was sent home. However, the next day, his condition worsened; he was unable to get up again, his temperature rose to 39°C, and a rash appeared on his body. When his parents called an ambulance a second time, the doctor suggested it might be chickenpox. However, by morning, it was clear that it was not chickenpox.

For the whole family, their son's illness was a nightmare. The worst part was that there was no cure for his condition.

At the Central Medical Centre in Astana, the parents were informed that there were no available spots for treatment, and they would have to wait a month for a call. Meanwhile, their child's condition was worsening. They decided to travel to Astana and attend a paid appointment with the head of the rheumatology department at the CMiD. Upon assessing the child's condition, she immediately ordered hospitalisation and prescribed the hormonal medication 'Metipred.' However, the alternate diagnosis of panniculitis could not be confirmed. Maksatik endured a thorough examination over two weeks, including a puncture and various tests, but ultimately, nothing conclusive was found, and he was sent home once again.

The exacerbations of the disease occurred repeatedly, yet the cause remained elusive.

A significant amount of time—almost a whole year—was wasted before a diagnosis was finally made. This process required a full genome sequencing analysis, which was sent to Korea. During this time, the child experienced irreversible changes, including enlargement of the liver and spleen, which might eventually necessitate removal, as all the platelets were accumulating in the spleen.

 

In January 2025, Maksatik's condition suddenly worsened; he developed sores on his body, and his temperature soared to 41°C three times a day. The local hospital administered four antibiotic drips and then referred the child to Almaty. It was at this point that the results of the full genome sequencing from Korea arrived, indicating the presence of PTPN11, a marker of this rare form of leukaemia.

 

Juvenile myelomonocytic leukaemia (JMML) is a very rare and aggressive form of leukaemia, making it one of the most challenging types to treat. It affects 1 to 2 children out of every 1 million each year.

 

The only treatment option available is stem cell transplantation, which involves bone marrow transplantation from either a related or unrelated donor. However, this procedure carries significant risks and complications.

 

Unfortunately, Kazakhstan lacks the necessary equipment to properly diagnose and monitor this disease. Daily blood parameter monitoring is essential, but there are no local laboratories capable of performing these tests, forcing doctors to send samples abroad. As a result, we often have to wait a month for the results. For the patients, like our baby, time is critical—every minute counts! Currently, treatment options are limited to clinics in China, Turkey, and Israel. The clinic that has responded to our request for Maksat's treatment is located in China.

 

Up until now, they have been receiving chemotherapy at the National Centre of Paediatrics and Children's Surgery in Almaty. On March 12, the parents took their son to Go Broad Healthcare Group in Dongguan City, Guangdong Province, China. They chose this clinic because it was the first to respond to their request for treatment. It also turned out that Professor Zhiyong Peng, who is part of the team that developed a treatment protocol giving Maksat a chance at life, works there. He invited the family for treatment and has an impressive statistical survival rate of 80-90 per cent.

 

At this clinic, Maksat has already completed one round of chemotherapy and is currently starting his second course, which will last 12 days. In three to four weeks, they plan to perform a bone marrow transplant, with a donor already found in China’s donor bank.

“I am writing to you from the depths of my heart, on behalf of my entire family, to request financial assistance for my son's health condition. May Allah prevent anyone else from facing such a difficult ordeal. Every minute is crucial in our situation. Please understand our plight and consider lending a helping hand to my exhausted son. I want to express my deepest gratitude to you in advance.” – Mum Maksat.

Help save little Maksat from the worst! He needs your support!