Help Ding Zihan overcome one in ten million rare diseases
We are a couple from China. On May 2, 2025, our first child was born. She is a lovely girl who loves to laugh, and we named her Ding Zihan. But on May 6, 2025, shortly after her birth, she suddenly fell into a coma and lost her ability to breathe independently. Doctors had to rely on an invasive ventilator to prolong her life. On the evening of May 6, 2025, the hospital issued a critical illness notice to our child. But no parent would give up on their child, and we implore the doctor to save her no matter how much RMB it costs. Later, the doctor found that her blood ammonia levels were continuously increasing, and if this continued, the child would face death. The doctor immediately used blood purification treatment to save her. At this point, she had only been born for 5 days and was covered in various medical devices. We didn’t even have time to see her once. She entered the intensive care unit alone and fought against death!
Thank God, we are fortunate that although her various organs were severely damaged, she survived through rescue and emergency treatment. Relying on expensive medication, her condition has gradually stabilized and she may even have the opportunity to become a healthy child in the future. She was diagnosed with Carbamoyl Phosphate Synthetase 1deficiency (CPS1), a genetic metabolic disorder with only over 3000 confirmed cases worldwide. According to previous treatment methods in China, she needs to take special medications and a low protein diet to maintain the urea cycle in her body. At the same time, she needs to reach a certain age for liver transplantation in order to regain her health. But this disease is very dangerous. Blood ammonia in her body is like a ticking time bomb, often eroding her brain, nerves, and liver.
At this point, she had only been born a few days ago, and no one could guarantee how long she would last? Can she wait until the day she receives a liver transplant? And liver transplantation surgery cannot cure the damaged brain! So we searched through a lot of information to find a second treatment plan! We found that the Children’s Hospital of Philadelphia in the United States can treat my child! The CRISPR gene editing therapy at Children’s Hospital of Philadelphia in the United States has successfully cured a patient with the same disease. The name of this little boy is KJ Muldoon. I contacted the Children’s Hospital of Philadelphia in the United States and submitted an application to become an international patient. The child will have the opportunity to receive treatment at the hospital, but treating this disease will cost approximately $2 million. The hospital process requires us to pay all treatment fees in advance in order to provide treatment for my child.
We want to save her, to keep this strong girl who loves to laugh alive, and to give her the opportunity to grow up healthy and see this beautiful world. We are willing to give everything for this.
We are currently selling our vehicles and properties, and borrowing to cover the treatment costs, but the exchange rate between US dollars and Chinese yuan has made our hopes very slim. So we ask everyone to lend a helping hand, help her pay for part of her medical expenses, help her receive treatment, and help her survive! We swear by our lives that all our information is true and valid. We will use all the funds raised to treat Ding Zihan.
I hope God can see our efforts and I hope everyone can help my child.
If you have seen this help seeking article, please give us some strength.
A couple from China, Cheng