YUGE'S STORY: Courage, Love, and Hope with Usher 1F
By Xin Chen and Rongkun Wang
Yuge and his parents Rongkun Wang and Xin Chen
Our baby, Yuge Wang, was born on January 21, 2024, in Geneva, Switzerland. According to the Chinese zodiac, he is a rabbit. Sadly, this little rabbit was born without sharp ears—he did not pass the newborn hearing test at the hospital.
Because there was no history of deafness in either of our families, we clung to the hope that the test must have been inaccurate. But once we were home, we did notice that he didn’t respond to voices or to the sound of objects dropping. Our anxiety grew. At his follow-up test two months later, doctors at Geneva University Hospital confirmed what we feared: Yuge was born with profound hearing loss. Listening to the doctor’s diagnosis, I felt my heart shatter. Tears streamed down my face as I wondered how my child would face a world without sound.
Reality didn’t allow us to stay in grief for long. The team of specialists at Geneva University Hospital immediately stepped in, reminding me again and again that an early diagnosis and intervention meant Yuge would still have the chance to hear and speak like other children. They quickly prepared a cochlear implant plan and arranged balance tests, speech therapy, genetic testing, and vision screening. (We later learned that they had treated another child with Usher syndrome type 1B four years earlier, and based on Yuge’s symptoms, they already suspected a similar diagnosis.)
On November 11, 2024, the genetic test confirmed it: Yuge has Usher syndrome type 1F. This meant that on top of his deafness, our little boy would also face progressive vision loss. From then on, I spent many nights in tears, searching endlessly for information. How effective would speech therapy be? Would he learn to walk normally? At what age would his vision start to fade? When would he go completely blind? How could he live independently then? I never imagined parenthood would begin with such heartbreaking questions.
On November 25, Yuge was taken into the operating room for a four-hour surgery to receive his cochlear implants. On December 10, his implants were activated. He remained calm, but he clearly reacted to sounds—that response gave us a moment of comfort in the midst of overwhelming sadness.
Over the following months, we returned to Geneva University Hospital twice a week for speech therapy and saw a physiotherapist for motor skills. Yuge worked so hard, making progress every single day. From not being able to lift his head or sit, he can now stand with support and even take small steps. From not responding to sounds, he now understands everyday conversations. To us, it feels nothing short of a miracle, and we cherish each moment of his growth.
Now, more than seven months since his activation, Yuge can call us Mama and Papa. He loves imitating sounds, is endlessly curious about new things, also has developed his own little personality and hobbies. He enjoys climbing up and down slides and chairs, always trying to stand on his own. He greets people with a cheerful “hello” and “goodbye.” He loves laughing, enjoys delicious food and music. To me, he is an angel baby.
Yes, watching him grow has eased, at least for now, the fears I carry for his future. I keep reminding myself not to let my worries steal the joy of his present. What we can do is stay informed, follow the latest research through the Usher 1F Collaborative, and share knowledge with the patient community we’ve built in China. Breakthroughs like David Corey’s mini-gene therapy give us hope, and encouraging results from Nacuity’s* clinical trials keep our spirits strong.
Usher 1F Collaborative Board Chair Melissa Chaikof meets Yuge at the Usher Syndrome research conference in the Netherlands in June, 2025
Yuge at his new home in Paris
In June, we took Yuge to the Usher Syndrome conference. Of course, he’s too little to understand what this trip means, but we want to send him a message: face life with courage, live fully with Usher, and always hold on to hope. And he will never face these challenges alone—his parents will walk beside him every step of the way.
Our deepest wish is that Yuge will grow up to draw strength and wisdom from this unique life journey. May he make peace with himself, be strong and free, ordinary yet joyful.
* Nacuity Pharmaceuticals shared promising clinical trial results showing that their experimental treatment, NACA, may help slow vision loss for people living with Usher syndrome.
