05/30/2026
Hi friends!
It’s been quiet here on my socials for quite a while, and I’m ready to share why 🤍
Our second son, was diagnosed with a rare genetic mutation, STAT3 Gain of Function disease. We found out on his second birthday (October 2025) and then came months of waiting on children’s mercy to get us into the speciality clinics. Sick season was not kind to us — every single visit to urgent care, the ER, the speciality clinics— I was explaining what STAT3 GOF was to the doctors.
I finally had enough and sought out a second opinion. I self referred to Mayo Clinic in Rochester. We almost went there in March but I connected with another mom of a STAT3 kid. We pivoted and decided to seek care at Texas Children’s Hospital in Houston.
Over the course of two weeks this month we met specialists in immunology, rheumatology, pulmonary, gastroenterology, endocrinology, hematology, otolaryngology, and oncology. We did 2 extensive blood draws, a CT, and 2 different ultrasounds. Plus myself, husband and 2 other kids also did blood draws so we can see if our bone marrow matches his. We have some labs still pending, but the consensus when we left was that it’s probably time to start our son on JAK inhibitors (it costs 15k a month without insurance and insurance commonly denys coverage for this medication) and planning for a bone marrow transplant.
Regardless of when we complete this procedure the recovery time and precautions we’ll need to take as a whole family— means a loss of income for my husband plus additional expenses for our family with travel costs, lodging, childcare, etc.
Until the procedure I’ll be running mini specials. Please share with your friends and family! More to come as I figure out availability 🤍 until then, know I’m here, still accepting clients, and doing my best to balance life 🩷
