Krew’s Story

a story worth reading


Krew Romero was born on June 11th, 2019 via a normal prenatal and postnatal course. At 7 months of age Krew was taken by ambulance to CHOC (Children’s Hospital of Orange County) due to a febrile seizure, where he was diagnosed with Influenza B.  Krew spent a total of 9 days at CHOC. During this time, Krew was on respiratory support. He did not have an reoccurring seizures. An EEG was performed and was normal. Unfortunately Krew developed a bacteria infection so we stayed to treat and watch him, with a decrease in his WBC count which was was 350 (should have been 1500 range). Krew was not strong enough for sedated MRI so they released him home and wanted follow up MRI when he was stronger and ended up being discharged with a referral for a follow-up MRI and further neurological imaging. Unfortunately, due to COVID-19, outpatient routine neurological imaging was not being performed, unless there was an acute condition or on hospitalized patients. Since Krew was not exhibiting any signs or symptoms of neurological deficiencies and due the record number of COVID-19 cases at this time, the family stayed away from medical centers as much as they could.

APRIL 2021

In April of 2021, Krew and his family moved to Maui, Hawaii. Establishing insurance in Hawaii proved to be a difficult task, and obtaining an appointment with a pediatrician took approximately 14 months. At this routine appointment, it was pointed out by caregivers that Krew had delays in language, gross and fine motor skills, and developmental stages. Their concerns were minimized with the pediatrician telling them that “sometimes boys are slower to progress” or “he is fine.”


In December of 2021, at 2 years, 6 months, Krew again developed a high fever. Other symptoms included vomiting and dehydration. Due to his inability to eat or drink anything, they took him to the Emergency Department at Maui Memorial Hospital. After a quick assessment, they immediately airlifted him to Kapiolani Children’s Hospital in Oahu, HI.  Krew was diagnosed with RSV. It was also discovered that the RSV virus had caused a blood infection which led to swelling of his brain. He was then diagnosed with ADEM or Acute Disseminated Encephalomyelitis after an abnormal EEG. Krew experienced a sudden loss of most neurological functions for about 5-6 weeks. These neurological deficits caused a delay in neurological function that was comparable to a 5-month-old baby. Krew had lost the ability to sit up on his own, hold his neck up without additional support, walk, clap his hands or eat on his own. All activities that he had been able to perform on his own before he got sick. His eyes were also crossing most day and it was noticed that he did not appear to be able to focus. During this hospital stay, Krew was hospitalized for 9 weeks. Krew’s mother and GIGI (Grandmother) were always at his side.

Various therapies were performed during his hospitalization. He received many courses of various antibiotics and  steroids for inflammation to control the edema. He also received IVIG therapy for a total of 5 days.  IVIG or Intravenous immunoglobulin is used to treat many immune deficiency disorders and inflammatory conditions. On the very first day of the treatment, they saw signs of improvement. The IVIG appeared to be helping, Krew was now able to have more control over his bodily functions, an improvement with his crossed eyes and he weas even able to start eating small foods, including his favorites, bananas and blueberries. Additional therapies included Physical therapy and occupational therapy. Krew received these therapies daily, and were instrumental in his recovery. Even though Krew was improving every day, he still had a long road to recovery. Krew has developed fluid behind his ears and was inserted with ear tubes to drain the fluid. An audiology report performed during this stay, showed an 80% bilateral hearing loss. We were told that he would never regain the hearing loss. Krew was fitted for hearing aids with additional rehabilitation services ordered. These included speech therapy and sign language ordered weekly. Krew had a normal hearing test as a newborn.

Krew was discharged home on January 21st, 2022. Krew’s daily schedule consisted of many rehabilitation therapies. Krew showed significant improvement and was beginning to show increased coordination. He was walking more steadily and even running at times with his brother all over the yard, parks and beaches. He had regained his ability to color, watch TV shows, learn sign language and perform routine toddler activities on his own. He was also able to eat and drink on his own. He was improving so much week by week, month after month.

It was noted that Krew appeared to have a diminished immune system and was appeared to be getting sick very easily. It seemed he was sick about every 3 weeks. Since his six-year-old brother was attending school at the time, it was chalked it up to the various childhood illnesses going around. Krew was also attending various therapy sessions as well as attending special needs classes at Haiku Elementary. The illnesses kept increasing, possibly from the increased exposure to germs from school as well as local parks. Even visits to local parks were resulting in a cold or low-grade fever by the next day. Krew’s family began to lessen his outdoor activities and unnecessary exposure to other people, in an attempt to reduce his exposure to any illnesses.


In November of 2022, Krew and his family decided to celebrate the holidays and travel to California for a week and then off to Montana for an early Christmas celebration. Krew and his family had a wonderful and fun-filled family celebration. Krew had fun snow sledding, visiting with Santa and even enjoying his first ever cup of Hot Chocolate. Krew appeared happier and healthier than he had in a long time.  On December 12th, Krew and his family said their good-byes to family, and made the trip back home to Maui. The next day Krew began to experience the same symptoms as his precious RSV diagnosis including fever and vomiting. On December 15 Krew was again admitted MAUI MEMORIAL HOSPITAL and emergency airlift medivac 12/19 to Kapiolani children’s hospital.  He presented with RSV, emesis, fever, edema, lower lung pneumonia. This time Krew had a negative blood culture.  Physicians performed multiple tests including an MRI and EEG, which showed seizure activity. A lumbar puncture was normal. An MRI performed on 12/27/22 showed cerebral fluid and atrophy, due to an unknown reason, since his last imaging 12 months prior. Steroids were administered to reduce inflammation, antibiotics were given for the pneumonia, as well as multiple daily breathing treatments. Krew was started again on the IVIG therapy. This time there were no noticeable changes. Plasma pheresis therapy was also attempted. IVIG was then performed again, with no noticeable changes. Neurology consults were performed and his providers reached out to specialist at Children’s Hospital Los Angeles and Stanford University. Suggestions from these specialist included a 2 day treatment with tocilizumab an immunosuppressive therapy. Again, there was no changes in Krew’s condition.

Krew’s family is currently waiting on results from a 700 EXOME genetic chromosom panel metabolic testing. These results are expected to be completed May-June 2023. There is currently NO TRUE diagnosis. Treatment has been aimed towards mitochondrial disease with regressive Encephalopathy. Currently Krew cannot sit up, walk, stand or eat on his own. He has a Naso-gastric feeding tube in place to eat and will be have surgery done 3/27 or 3/28 for G tube. He does not currently show any signs of recognizing the presence of his family. He struggles to focus on his family or any objects in front of him for more than a few seconds at a time. He appears very disconnected and only exhibits non-purposeful and unintentional movements. Krew currently requires 24/7 care.

On 3/22/23, Krew’s family was informed that he will be discharged home. They are not able to transfer him due to his stable status. His family was told that other hospitals will not accept him as a transfer, due to the amount of all medical protocols that heave already been performed. The family will now be trained to set up his feedings and educated them regarding his medication schedule and administration. He was discharged April 4th for home care.

All new consults or visits will now be denied by insurance and billed to the family.

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