Love 4 Lily

Updated 12/24/20 to add what little we do know. Lily has a neuromuscular disease, dysautonomia, and chronic fatigue. She takes several daily meds (3 times a day) to try to prevent flare ups and control pain. She also receives IV infusions every other week. October- March are usually the worst for her. The medical bills continue to roll in even with good insurance it’s impossible to keep up but we try. Lily continues to battle some unknown health issues.  Each time she gets sick it’s worse than before.  The last 2 times she has gone into septic shock. We have seen 100s of doctors and nobody can get to the bottom of her health issues.  We already cannot keep up with her medical bills financially and are inpatient again for sepsis currently. We may need to explore options outside our state to see specialists in a research hospital.  Either way, our family could certainly use any and all help to contribute to her continued medical expenses.

The journey: This really all started for Lily at 18 months. She is now 11. That was the first time we got sent to Riley Children’s Hospital because nobody could figure out why this perfectly healthy baby girl got so sick so fast. At that time she was diagnosed with mono for the first time. Since then we have seen over 100 doctors across 7 specialty areas. Her immune system doesn’t fight anything and they can’t figure out why. She gets everything x10. She is usually healthy in the summer because the germs are down. Each year it seems to get worse. She gets sicker, it lasts longer, and it comes on faster. In the last year, she has gone into septic shock twice. Both times it happens within 12 hours of symptoms. We have had numerous tests done both inpatient and outpatient. They have just continued to rule things out at this point. Each time there’s a shot in the dark diagnosis it gets ruled out. And when she is healthy we can’t get doctors to do anything. It’s frustrating that they basically wait for her to be incredibly sick to try to find answers. We both stay with her at the hospital because we are scared to leave her. Financially we have struggled the past year. We are unable to keep up with her medical expenses even with insurance. Brad and I have actually already met with a bankruptcy attorney because we can’t see another way out. We haven’t filed yet because she got sick again. We have considered selling our home. We want to keep life as normal as possible for both Lily and Landyn.

I can’t even really put into words what this has been like for our family. Worry is a powerful emotion. To hear Lily cry and ask doctors why they aren’t helping. She wants to be at school. She wants to be with her friends. She wants answers. We want answers. We put on a brave face for the world, but I can’t begin to explain the number of times I have cried. I cry a lot by myself. I cry because we can’t help her because we don’t have answers. But mostly I cry because I’m scared that one day I’ll wake to find she isn’t breathing. I’m scared that the next time she’s sick will be the last. She’s scared too. Daddy is scared. Little brother is scared. We cannot afford to watch and wait 

-Brittany (Lily's mom)