Name: Zoe
Age and Date of Diagnosis: diagnosed in October 2021 at 11 years old
Diagnosis: Primary HLH
Location of Treatment: Queensland Children's Hospital (Australia)
Child’s Interests: Zoe loves to make & sell bracelets, play with her dog Rocco & go to the beach. She loves hanging out with friends & use to love playing touch football.
Short description of individual's journey:
We noticed some changes within Zoe in the weeks and even months leading up to her initial hospital stay, she complained of double eyesight so we took her to the optometrist who prescribed her reading glasses and told us that her eyes will strengthen over time. Then her hand eye coordination while play her sport became apparent, she was aware that she just couldn't navigate catching and passing the ball like she could just a few short months ago. Before too long Zoe became very clumsy, her speech started to slur and lastly her right eye turned, that is when we started to worry something was very wrong and we needed to find out why. While an inpatient Zoe had to endure a lumbar puncture (which she insisted to do without sedation), more bloods, eye specialist & the start of her steroid medication. An initial diagnosis was that she had an auto immune disease and she will be treated with steroids and all will be fine.
She didn't have an auto immune disease, and she wasn't fine.
Zoe's case was referred up to the Queensland Children's Hospital in Brisbane (about an hour away). As far as we were told just about every specialist was looking into her case, with multiple blood tests and MRIs to confirm what was going on.
In October 2021 we were called into the amazing Dr Peter McNaughton's room in immunology and was told that Zoe had HLH. Our doctors found a 10/10 unrelated match in Poland fairly fast and the process to get ready for transplant began. Zoe is now day +45 from transplant. It all went well with minimal side effects and the only 'bump in the road' was a seizure the night before she was going to be discharged. We are currently staying close by the hospital in case of any fevers/infections, but we hope to go home in the next couple of weeks. You can follow along with Zoe's journey at Team Zoe HLH Warrior!
