With his love for Transformer and Minions, Campaign One At A Time is hosting a fundraiser to send 3-year-old Adrian “Yan Yan” Ruiz to Universal Studios. Living in Chula Vista at the time of his diagnosis, Adrian was diagnosed at 2 and a half years old with a rare skull based tumor called Clival Chordoma.
Campaign One At A Time Director Nick Ordonez said the organization sponsors kids that are battling life threatening illnesses, mostly cancer. Though he now lives in Orange County, he has family in Chula Vista, and said that the organization does much work in the San Diego region. Ordonez said the goal is to make this trip happen with all expenses paid, so it has a goal of $5,000 running through January to send the entire family to Universal.
“We also send the warrior boxes, care packages, and while in the hospital we do food drives and other things for the families, but our main goal is to make dreams come true for them,” he said. “In Adrian’s case, his family really wants to bring him to Universal Studios because he loves Transformers and Minions, and he obviously has not been able to do for the past year and a half. They are struggling financially. Neither of the parents can work right now.”
Adrian’s mother, Abigail Ruiz said in the middle of the pandemic in January 2021 they found out that Adrian had a tumor around his brain stem when he went to the emergency room because he could not move his left arm. He was admitted into PICU at Rady Children’s Hospital that night with a 16 hour surgery three days later.
“The reason he could not move is because the tumor was pressing his spinal cord,” she said. “It was around the cervical area, C1 to C3. They needed to reset the tumor through his palate, and the next day they needed to reset the tumor from his back of his neck, which took 15 hours, and at the same time since the bone was eroded, they had to do a bone fusion as well.”
Ruiz said Adrian could not move post-op, he had a neck brace, tubes everywhere, and a week later they needed to opt for a tracheostomy for his airways since the tumor was so close to his brain stem, and a gastrostomy placement so he could get nutrition.
“He was in PICU for three weeks and each day there were little movements, like he would move an index finger, or his whole hand, but he could not lift his fingers or his legs,” she said. “Every day was struggle, but every day there was a milestone. He could move a little, he was awake. He would raise his eyebrows up for yes, and frown for no.”
After PICU, Adrian went to in-patient rehab where he made gains from not talking, walking, unable to eat. Ruiz said two and half months later he walked out on his own when discharged, after his occupational, physical, and speech therapy. After this recovery, the only thing Adrian could not do was fully move his neck. He only had 50% head and neck mobility due to the bone fusion.
“That was in March,” she said. “Unfortunately, in April, he had to get another surgery to debulk the tumor that was continuing to grow. That was only a five hour surgery, three days in PICU, then home. That was far easier than the first two surgeries.”
Adrian then went through chemotherapy. Ruiz said that Clival Chordoma is an extremely rare tumor, one in a million, and even rarer in children. Research is minimal, and she said that chemotherapy is more like “it is worth a shot” because of the lack of research and specific treatments, except the uses of surgery and proton beam radiation. But she said they will not do radiation due to the closeness of the tumor to the brain stem. She said it would be considered if they can get the tumor smaller and farther away from the brain stem. Ending chemotherapy in December, Ruiz said the results were unresponsive and the tumor was still progressing.
Adrian is getting ready for his next surgery this month to debulk the tumor and hopefully get it further away from the brain stem so he can begin proton radiation.
“This also happened in the middle of a pandemic, and it was terrible,” said Ruiz. “Me and my husband had to learn to treat the tracheostomy. We must be in-patient all the time. Me and my husband Paul must switch off to take care of him between taking care of home and being at the hospital. Divide and conquer, you know. Last year, he was in the hospital 70% of the year. Plus, we have two other kids 7 and 6, Ace and Ayla, so we had them homeschool to alleviate all of this. We have been quarantined since quarantine began. There is no difference for us.”Campaign One At A Time is reaching out to local businesses and individuals to see if it can get any support with either donations or getting his campaign more exposure. You can view the campaign at www.instagram.com/oaatwest, and Adrian’s campaign page where donations can be made at https://campaignoaat.org/portfolio-item/current-campaign-adrianyanyanmaxstrong/.
