On May 27, 2019, Trevor came to his mother, Josie, hand on his forehead, with a severe headache and said, “Mom, something is wrong. I need to go to the hospital.”

MRIs showed that Trevor had a category 4 AVM (arteriovenous malformation), a tangled mass of blood vessels on the left side of his brain. The mass had two aneurysms, one which had ruptured and bled around his brain, which caused the headache that brought them to the ER for treatment.

Trevor underwent surgery at another children’s hospital to remove the mass and save him from another rupture — one that could be fatal. During the surgery, he suffered a stroke which left him paralyzed on his right side and left his parents very scared for his future.

Wes spent his first three days on a ventilator. It was determined that Wes had suffered a grade 1 (the least severe type) intraventricular hemorrhage (IVH), better known as bleeding in the brain, but his providers were hopeful it would not lead to further complications.

“Wes was getting better, but then we found out he had sepsis which was quite an ordeal,” Teri says. “While everything ultimately turned out alright, there was still a lot of uncertainty about what Wes’ future would be like. We just had to wait and see as he developed. That ambiguity is not what any parent would want.”

“Sam was born 5 weeks premature,” his mother, Barbara recounts. “The impact this would have on his future development was completely unclear. We were told that we just had to ‘wait and see’.”

Sam progressed typically during his infancy, but at 5 months as his right hand became more capable, the difference between the use of his hands became pronounced.

“His left arm would just hang behind his back. It’s like he didn’t even know that he had it,” Barbara says. “After stressing these concerns to his pediatrician, we were referred to a neurologist who upon meeting Sam, immediately diagnosed him with left-hemiparesis cerebral palsy. A subsequent MRI indicated that it appeared that Sam had a stroke while he was in utero. Although, having been diagnosed with cerebral palsy, the impact was unknown and would only be seen as Sam developed.

Owen had a condition called aqueductal stenosis, which means that the third and fourth ventricles of his brain did not develop properly, causing his brain to fill with spinal fluid to the point where it appeared he had virtually no brain tissue. There was no way for the spinal fluid to flow through to his spinal column so the fluid in his brain with nowhere to go.

MaKiah was born premature at 29 weeks. When she was 15 months old, her parents were told that she had cerebral palsy. When she had her first seizure at 18 months, she was diagnosed with epilepsy. Now 14, she’s been hospitalized as an inpatient (both planned and entirely unplanned) more than 50 times.

“I think I was about 11 or 12 when the back pain really started to bother me,” Kyra says. “The pain was relatively minimal and it wasn’t something I couldn’t push through, but it was just a nagging issue that persisted. I was an active kid and was climbing constantly, so it was the sort of thing you could explain away. But it became impossible to ignore.”

Kyra eventually consulted a physical therapist at her local gym who suggested she speak to her parents about setting up an appointment for a medical consult.

When they did, the news was grim. The consult revealed that Kyra had severe adolescent idiopathic scoliosis (AIS) and that her spine was curved into an S-shape at a degree of 52 degrees. Generally, if the curvature of the spine exceeds 50 degrees, it will require spinal fusion surgery.

Harriet’s cancer journey began in August 2019, in her pediatrician’s office – Kelly took Harriet in to the doctor for an ear infection that wasn’t going away. But when a nurse practitioner found Harriet’s lymph nodes and spleen both felt enlarged, she decided to do a blood test. When the nurse came back in the room with the results in her hand, she had tears in her eyes. Harriet’s white blood cell counts were extremely high – a normal count is around 10,000 – Harriet’s was 470,000. A few hours later they received the official diagnosis – t-cell acute lymphoblastic leukemia.

On April 1, Harper’s doctor called Sarah to tell her the news that had been lurking in the back of her head ever since Harper started spiking frequent fevers in February. Tests for the flu and mono had come back negative, and a bone marrow biopsy had confirmed what Harper’s parents most feared. Her official diagnosis – acute lymphoblastic leukemia.

At 9 months old and after two surgeries, one to drain fluid from around Brice’s brain and another to biopsy a tumor, came the final diagnosis: embryonal tumors with multilayered rosettes (ETMR). This type of tumor is so rare that only 10 children are diagnosed it per year, and there’s hardly any research on effective methods of treating it.