Skylar was diagnosed with Neuroblastoma at 4 months old. Skylar was diagnosed incidentally. She was rushed by ambulance to the hospital for a fever of 105 and seizures where they diagnosed her with a kidney infection. Due to the severity, they did a kidney ultrasound where they found a mass. After a CT scan, she was confirmed and diagnosed.

Skylar was diagnosed with a rare neurological disease associated to the neuroblastoma called opsoclonus Myoclonus ataxia syndrome. This causes a wide range of issues including but not limited to eye movements, involuntary muscle spasms/jerks, sleep disturbances, mood and behavioral issues and sometimes the inability to walk or talk.

Skylar completed 6 rounds of chemotherapy and 10 rounds of IVIG and is now NED (in remission). Unfortunately, she had an OMS relapse and has now done 5 days high dose steroid dex pulses, 4 weeks of rituximab treatments and now is currently doing monthly IVIG treatments along with steroids daily at home. Due to the ongoing treatment and impaired mobility, I have had to quit my job and finances are very tough right now. Skylar has an 8 year old brother who has completely changed from all of this.

Skylars diagnosis changed everything we thought we knew about life for the good and the bad. We never take a second for granted anymore. But it has caused so much stress and tension and depression in our household. Faith is what keeps us going.

Despite everything Skylar has been through and still going through, she seems to always have a smile on her face. She has taught us about courage and bravery that we didn’t know was possible.

Hope session by Erin Davison Photography | Facebook | Instagram