Heidi DeRose

I'm asking for help for my daughter Heidi, pictured here with her brother on his wedding day. She has been diagnosed with a rare condition called SMA syndrome. It began with nausea and progressed to her being unable to keep food down, weight loss and malnutrition before it was finally diagnosed. It mostly affects tall, lanky people and that describes her to a T. It means that her small intestine (duodenum) is blocked and she needs a new route from her stomach to her intestines. She's been in the hospital for two weeks now and will eventually go home with a feeding tube until she is strong enough to withstand surgery to repair it. She's very weak and in pain. My concern is her health care premiums, supplies and formula. She needs that follow up surgery. Health care in the U.S. depends on her job. We don't know if her health care plan will provide the "formula" she needs, or the supplies to care for the feeding tube, We just don't know. The formula is very expensive, and I've been pricing some of the things she will need and it's got me worried. She needs the formula for a few months according to doctors. She's an Awesome person who has worked at a community program for the disabled for 15 years. I never thought we would have to ask for money but as her mom, I'm so worried about meeting her needs. If you can help we would greatly appreciate it. If you can't please share the link.