I was diagnosed in 2019 and am now in medical debt. Please share and help! https://www.gofundme.com/f/savannah039s-rare-diagnosis
In the summer of this year, I experienced a migraine that lasted two months, vision loss in one eye, and endless vomiting with no answers every time I ended up in the ER. I tried everything to rid my migraine and went so far as to get a painful daith piercing, but nothing helped. In October, I experienced the same symptoms that drew me to the hospital once again, except this time, they found five brain lesions and an inflamed optic nerve that’s caused me to become half-blind. I was diagnosed with a rare disease called NMO that requires infusions every two weeks to prevent another relapse.
It’s taken everything in me to get up in the morning. Work has become an endless struggle. I’m supposed to be the strong one, but right now, I feel like a failure – a disappointment in so many areas of my life.
Then I saw a photo of a little girl in the hospital on Twitter that stunned me. Her name is Akane, and she was diagnosed with NMO in November of 2018. She’s lost vision in one eye and she has to have monthly infusions as her treatment. It broke my heart that such a young girl is going through exactly the same thing I am as an adult and yet – she’s smiling.
She is the epitome of bravery in its finest form.
Akane didn’t ask to be sick. Like so many other children diagnosed with an incurable illness, the time they spend in hospitals should be time spent running outside without a care in the world. They should be role-playing make-believe nurses taking care of sick dolls instead of being a sick patient themselves. Life isn’t fair sometimes, but Akane is showing us that though life throws curveballs, we can still be grateful.
Through Akane’s bravery, we too can smile in our pain. We can be brave like her.
Despite the pain that I know Akane is going through because I’m breathing it right now, her smile is teaching me that I don’t have to focus on my pain because I have it. I can ask for some sonic and a board game on my next hospital visit and be content that I’ll have someone to play with. Whether it’s my husband, friend, or mother-in-law, someone always shows up because no matter what, I’m loved. I’m loved like Akane is loved by her mother, Crystal. We have people with us, holding our hand through scary times, and this is what matters- not doing this alone.
It doesn’t matter how bad the pain we are feeling is, as long as we can still feel the love of those that love us, we will survive that pain, again and again.
Though life threw me a curveball, I can still be grateful I have my husband who keeps me warm at night, a job that pays the hospital bills, friends that have been there for me, my twin who never fails to make me laugh, and a house to come home to.
As this year ends, despite being sick with a scary, unpredictable diagnosis that has changed a lot in my life, I will be OK because Akane is OK. And if a seven-year-old can be OK in her diagnosis, so can I.
If I know anything about what bravery is, it’s because of Akane.
*Photograph for this article is used with permission from Akane’s parent.
*Donate to help find a cure for NMO at the Sumaira Foundation for NMO here.