I woke up today filled with a weird feeling that something was headed my way. I got so nervous about it, I immediately threw up. My stomach must have known as well, because every single item I ate last night was purged, not that I eat much these days anyhow......
You see, this pile of horrible stuff that's been hitting us like we're a moving target, every single time I got this feeling... sometimes two days before, sometimes 3 weeks. But this one is big, of that I am certain. After spending eight days in the hospital, we went home for 3, had a trip to my favorite ER at Boulder Community Hospital, and then back for inpatient at Rocky Mountain Children's Hospital since Thursday.
Solstice has been saying for days that she feels as though she is going to die. Not that she wants to die, but that she just has a feeling about it. When she says this my heart breaks, as I am not all that certain she won't... unless I can get her to a specialist. This disease has a 33% death rate.
I've not stopped trying to get her help. I have called everyone I know, asking for information. I've pulled favors in Austria that got me an email address of a famous HAE researcher, I've begged my friends and family for money. I call places all day long, trying to find someone to help her. Greg too has tirelessly fought to try to find an organization that can help us. She can't fly, she must be in a medically equipped ambulance for 17 hours.
Solstice takes Cinryze and two other very expensive medicines Berinert and Firzyre, to stay alive. Running out of options, on Friday I begged Firzyre to help me. Earlier today, I cried and begged Cinryze to help. She desperately needs medical transport, and insurance will not pay.
We have been in the hospital for pretty much four weeks solid, except for a couple of days out. She just gets more sick everyday,,,,and no doctor knows what to do here in Denver, because they have never even seen the disease before plus she has a super severe case.
Which is why I was grasping at straws calling the big drug companies, asking them for help while they took my monthly order with a $9000 co-pay.
You'll never guess what happened... they declined to help... and so here I sit still in Denver with a child who's life depends on being in Cincinnati. Stuck with an insurance company that won't pay... while they walked away with 4.2 billion dollars getting rich off my child's disease.
If only I could unleash the expletives that come to mind when I think this through....
This was part of her attack earlier tonight... this one came on within minutes. These happen to her almost daily, where is my angel?
https://www.giveforward.com/fundraiser/03g3/help-solstice-get-to-cincinnati
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