Emil and family

Hi, I’m Anna and I’m fundraising for some support for our family.

I’ve never been the one to ask for help (I guess I just always been used to doing things alone) but someone nudged me to do this.

I’m not sure where to start with our story. My husband is 38 years old and is diagnosed with Wilson’s disease. If you don’t know what it is- it’s a rare genetic liver disease where the copper is stored in the body and becomes toxic. If untreated, the result is total body shut down and eventually death. Because It’s rare, it’s easy to miss. first my husband was diagnosed with a bunch of different mental illnesses, then with Parkinson’s, and finally this past year we got an actual diagnosis.

well the journey has been BRUTAL to say the least. We have two small kids, no family to hell of support us, and we get by with a little help from the friends and we’ve made along the way.

this whole experience with our medical system and just dealing with my husbands disease has left me traumatized. There is no such thing as self care in my vocabulary. I haven’t taken a vacation in 4 years nor a day off really.

this disease is crazy and after surviving my husbands mental issues, his suicide attempts, in had to figure out how to care for him on my own. I tried everything I could to keep him home but inevitably he needed nursing home care. He needs 24 hour care because he is physically disabled and also cognitively impaired.

the crazy thing is his prognosis is good!! The medication has stabilized his liver now it’s a waiting game for the toxins to leave his body. We don’t know the full recovery but he is supposed to!!

the difficulty lies in fighting for his care. It seems like no one in the medical field (or few people) really care to help and support. Every day is a battle. I had to fight for many years just to get the right diagnosis! Doctors we’re not listening. I had to fight hospitals, other doctors, insurance companies, nursing homes, you name it! I fought em. Every step of the way i have been fighting to get my husband back home, to me, to his kids!! He loves them more than anything.

this has been a wild and crazy ride and has created a hardship on our family. We are literally living on a prayer each day. I hold my breath and pray that the day will be ok. I am still fighting everyone and everything.

our health care system has been awful. There is no justice for the disabled. getting state aid is traumatic in and of itself!

I hope this gives a picture of what we’re facing. I know it’s hard times for everyone. But right now I don’t have an income even though I opened my own speech therapy clinic, I’m just breaking even to run this service for my community but I am not making a profit and won’t for a little while longer. I started this business in hopes of securing our family financially through this time but we’re not there yet., Emil receives social security benefits, we have a ton of medical and non medical needs and honestly, a day at a hair salon wouldn’t hurt me either! I haven’t really given much to myself. Our savings is almost up. He needs a wheelchair. There a giant list of needs. He’s broken his teeth from falling, his vision got worse from the copper needing glasses sooner than coverage allowed, he’s broken countless gadgets, damaged the house from falling, he needs adaptive equipment for most life things

thank you for reading!