A rare disease is lonely. What makes it more lonely is when you have a disease no one’s ever heard of like NMO (Neuromyelitis Optica or Devics).
It’s not like Multiple Sclerosis or Narcolepsy where you immediately have a picture of the disease because of its national awareness. Neuromyelitis optica doesn’t roll off the tongue well, and it sounds more like the name of a transformer or in my husbands’ words, a Decepticon. NMO doesn’t get a lot of traffic like MS, even though the two are very similar and many people have been living with a misdiagnosis of MS for decades when the underlying disease was NMO.
The reason NMO has its own identity now is because of a specific antibody that MS doesn’t have, and it requires a different treatment — different treatment that could mean a matter of life or death. A treatment that means a better quality of life. A treatment so that babies like Corine Craig, can live a normal life.
Corine was officially diagnosed with NMO on March 3rd, 2019 after her second birthday. Her spinal cord is covered with lesions and her most recent NMO attack was optic neuritis (which is a painful inflammation that damages the optic nerve — causing blindness). She can hardly see from both eyes and has the anti-body count of an adult. Corine’s doctors don’t understand how she is still walking.
According to Pharmacy Times, approximately half of patients with NMO will lose their sight and the ability to walk 5 years after a diagnosis.
Christa Craig, Corine’s mother, explains the hardship of watching her daughter cope with NMO.
“It’s heartbreaking to watch her endure this disease. It’s so hard for me, because Cori can’t tell me exactly how she feels — just that her feet hurt, or her eyes hurt, or her back.”Christa Craig
One of those heartbreaking moments was when Corine was taking a bath and Christa heard whispers of, “It’s gonna be OK.” Corine was gently assuring herself out loud in the tub when her pain levels were high.
I don’t know what it’s like to be a caregiver, but I know that most patients with a debilitating disease need one. We need someone to hold our hand in pain, help us get out of a hot bath, or gently soothe us to sleep. Thankfully, Corine has her mother, including many that love her.
Corine is scheduled for a stem cell transplant in the hopes of reversing the disease completely. She will likely lose her hair and go through side effects, but this just goes to show her and her mothers’ strength; their hope for something greater. The possibility of a disease-free life — a chance to take back childhood. A chance to doodle with smelly markers or run in a yard of green grass without pain.
Disappointment will always be there. Loss will always come. Illness strikes good people, innocent children. It takes away childhood, bright dreams, and normal life. Corine and Christa know this well.
But it can’t take away the fight for those things. Disease may altar lives, but it doesn’t mean we let the things we can’t do keep us from doing the things we can do.
Corine is an eminent example of this. She’s a hero to so many of us that suffer from a rare disease. She fights a disease that we as adults can barely cope with. But she lets us know that no matter what life throws our way, it’s going to be OK.
So, we stand together for Corine and her mother in the hopes of getting what they truly deserve. May she continue to laugh, persevere, and get her nails painted at home rather than long hospital stays.
Corine is our hero without a cape. We take her fighting spirit with us in our hearts, as we learn to cope with our own illnesses, in the graceful fight that she radiates.
To donate to Corine & Christa click here.