Urgent Support Needed for the Severance Family

I am reaching out to share some devastating news and to humbly ask for your help. Last month, my 9 year-old brother, Julian, was diagnosed with a rare brain tumor in his thalamus. Less than 5% of brain tumors are in the thalamus and they are very difficult to treat. We live in Arizona and the best pediatric neurosurgeons to treat this type of tumor are out of state. I just turned 18 years old. Our mom is barely hanging on. She has several debilitating, progressive autoimmune diseases that affect every part of her body. She has suffered multiple mini strokes and has frequent blood clots and episodes of internal bleeding. She has some cognitive impairment, short-term memory loss, and aphasia. Some days she can’t walk. Some days she can’t use her hands. Every day she has severe pain, fatigue, nausea, and dizziness. The medical treatments that can alleviate her symptoms and extend her life, including stem cell therapy and hyperbaric oxygen therapy, are prohibitively expensive and must be paid 100% out of pocket. Julian needs second, third and fourth opinions from the best pediatric neurosurgery centers and each one of these additional evaluations costs at least $1,000 out of pocket. My mom also hopes to get him started on complementary therapies right away to ensure his best chance of survival and recovery.

The funds raised through this campaign will be used to cover housing expenses, medical treatments, therapies, medications, hospital bills, surgeries, and transportation costs.

Any contribution, no matter how small, is a lifeline of hope for my family. We are forever grateful for the love and support. Updates will be shared regularly to keep you informed.

I understand that not everyone may be in a position to donate, but you can still help by spreading the word about this campaign. Please share it with your family, friends, and on social media platforms to reach as many as possible.

With love and appreciation,

Scarlett

Update 07/31/23: Julian is getting another brain MRI right now. It’s his first time under general anesthesia. This MRI was originally scheduled for several weeks ago, but they were unable to access a vein for the IV. After several pokes, Julian had a panic attack and the procedure was rescheduled with general anesthesia. He has a consultation scheduled with a pediatric oncologist at Mt. Sinai in New York. His brain tumor isn’t the only health concern. Two weeks ago, Julian had an echocardiogram and it showed some aortic dilation. This puts him at risk of aortic dissection. If his aorta continues to enlarge, he will need an aortic repair or replacement. The aortic dilation and the difficulty accessing a vein are most likely due to a connective tissue disorder. He needs genetic testing to confirm.

Update 08/09/23: Last week, Julian had a second MRI of his brain. He also had an MRI of his lumbar spine as he has been waking most mornings with severe spinal pain. The brain tumor has not grown since his first MRI 80 days earlier. However, the MRI detected something on his lower spine so he needs to see a spine surgeon and get more scans. Last week, he also had numerous blood tests. Several of his tests came back abnormal indicating malabsorption and a hormone deficiency. So he also needs to see a gastroenterologist and an endocrinologist for more scans and tests. He has a consultation this Monday with a pediatric oncologist at Mt Sinai Hospital.