Hope for Aubree

Aubree was the typical happy, out going, two year old girl who enjoyed chasing and playing with her brother. Within weeks of getting sick her symptoms progressively deteriorated and her doctors couldn't figure out the cause.

Sweet Aubree's body/immune system is confused and thinks her brain is a virus. Her symptoms include ataxia (tremors) in arms and legs, unbalance, night disturbances and mood swings. She has trouble walking on her own and is uncoordinated. She has been diagnosed withOMS (Opsoclonus-Myoclonus Syndrome). Opsoclonus is an unusual disorder of eye movement in which both eyes dart involuntarily (dancing eyes) and myoclonus means brief muscle jerks and "ataxia" indicates incoordination. Tumors are found in about half the cases of OMS. Thankfully in Aubree's case no tumors have been detected.

Treatment requires oral steroids and IVIG (intravenous immunoglobulins) two days once a month for 6 months. She also must undergo physical, occupational and speech therapy. Her neurologist group has only seen 1-2 cases and say that this is a 1 in 10 million disorder. There is a 41% chance of relapse at least once.

Aubree has had 2 brain MRIs, full spine MRI, spinal tap, chest X-ray, abdominal ultrasound, pelvic CT, MIBG scan and countless blood draws along with genetic testing. Her parents, Amanda and Dustin, have been by her side taking her to all her appointments and staying with her in the hospital. The medical expenses are adding up and Amanda has had to take a lot of time off work.  Aubree can not be around people or children who have had recent vaccines or flu shots due to her risk of relapsing. Any high fever or ear infections can also cause her to relapse therefore she can not return to daycare and be around other children.

Dr. Pranzatelli is a specialist of OMS who is located in Florida at National Pediatric Myoclonous Center. He is reviewing her chart and Aubree will need to travel to Florida to get further treatment, since she isn't responding well to treatments here.

Aubree and her family would appreciate any help they can get for her medical expenses. Please donate, there is no amount too small.
Thank you!
Mary and Amanda