Berkley

It’s Warrior Wednesday and we wanted to introduce you all to Berkley and her family. Their story is told below by her mom.

“I wanted to reach out because of Berkley’s complicated HLH journey we are now on since Memorial Day, so I’m sharing it below. I hope this brings more awareness.

Berkley’s HLH journey

On Memorial Day Berkley was admitted to the hospital for CMV and EBV (Mono). She was on day 16 of high fevers of 103-105, so they decided to run HLH markers. Thank God for them doing this so quickly. She was started on HLH medication and was being managed by the St. Jude affiliate clinic in Baton Rouge. Unfortunately, about a few days after, Berkley had a pulmonary hemorrhage. She was intubated and flown to St. Jude in Memphis. Upon arrival, she was in respiratory failure and septic shock. St. Jude (But God!!) was able to save her life. She was getting better and about a week late developed a really bad MRSA infection that entered her bloodstream. They were able to get this under control with Vancomycin. Shortly after, we realized Berkley’s small intestine fluids were leaking via CT scan. They removed 36 in of small intestines, 10 cm of colon, and her appendix and cleaned her out. She has an ostomy bag that will be able to be reversed once she’s 100% healthy. She’s had one additional surgery since then to repair tearing of inner wound and another clean out. All of Berkley’s HLH genetic testing, autoimmune disease testing, and general additional gene testing of the 1,000 plus genes came back negative, determining Berkley HLH was secondary to mono. So, Berkley started improving and was scheduled to move outpatient on 7/20. She was learning to walk again after being in the hospital 50 days. Unfortunately on 7/19, Berkley developed high fevers, nausea and rapid response was called. Her organs were so inflamed they barely had blood light up on the high radiation (higher than normal) CT scan. She was placed back in intubation while they figured out what was going on. They determined her second flare up was possibly DRESS to HLH. They immediately stopped the blood pressure medicine she had been put on, restarted HLH medication, and her numbers are now trending down, but very slowly. As of today, no more fevers and she seems to be doing good. They are now doing function tests on her cells to determine if she has an immune disregulation or immune-suppression disorder. Those test could takes weeks to months to come back. We are praising God for Him saving our girl not once but twice. We are also praying to get some answers. Wanted to share Berkley’s story because the doctor’s at St. Jude have called her an extremely complicated case. We are on day 67 of inpatient at St. Jude. Hope this helps someone to see the first signs of HLH. Berkley was a happy, healthy 3 year old before all this happened. The last picture is Berkley’s current picture. She has a group for Praying for Berkley.

Hope this story helps!!!!”