Four weeks ago, Maria and Dan noticed some irregular eye movement with their 1 year old daughter, Ellie. They brought her to the ER and after a negative brain MRI, she was diagnosed with Spasmus Nutans.

After some time at home, she began to lose the ability to walk, and was eventually unable to stand. They brought her back to UMass where she received a chest x-ray, abdomen and pelvis ultrasound, blood and urine lab work…. any tests looking for a tumor. Everything came back negative. Ellie was then diagnosed with Acute Cerebellar Ataxia, a condition that should resolve within 2-3 weeks.

Three weeks into this new diagnosis, there was zero improvement. She fell while crawling, cracking her two front teeth when Maria and Dan made the decision to get a second opinion at Boston Children’s Hospital. Ellie was seen fairly quickly by Dr. Mark Gorman, a specialist in Opsoclonus Myoclonus Ataxia Syndrome (OMAS). He immediately admitted her, confident she had OMAS, where 50% of the cases are caused by a Neuroblastoma in the body. Tests completed at UMass ruled out 80% of the possibility of the tumor, but she would need a full body MRI to confirm 100% that there is not a tumor.

After initial reviews of scans showed zero tumors, the doctor had a second radiologist look at her MRI, where they did in fact find a tumor in her right abdomen.

The next steps currently include the potential for additional scans (similar to a PET scan) to check for more tumors, a consultation with oncology, and surgery to remove the tumor(s).

While these tumors are considered cancer, they are typically not aggressive. Ellie will hopefully be able to avoid the need for radiation or chemo, however the oncology team cannot say for sure until they have the tumor out.

With the undetermined road ahead including steroids, infusions, surgery, and follow-up appointments, we are hoping to help Maria and Dan with this unplanned financial burden (medical expenses, parking, gas, time missed from work, childcare for big sister Vivie) and stress this has put on their family.

Any little bit helps.