About a year ago, we were told that our 18-month-old daughter, Keira, had cancer. As we struggled to comprehend this news, the moment became even more surreal when we were told that this cancer was rare, debilitating, and had triggered an even more rare auto-immune disorder that was attacking her brain and nervous system. The combined effect had stripped Keira of her ability to walk, stand, speak, and sleep. We were told that Keira may never develop as a normal child, might need assistance walking, and might be cognitively impaired.
We were told that the Keira we once knew, may be gone.
Since then, Keira has shown us a thing or two herself. She has shown us that her spirit and determination can overcome even the most insurmountable obstacles. She has endured countless treatments, infusions, a daily drug regimen, sedations, scans, and done so with strength, courage, and even smiles and laughs. She has learned to walk again, to run, to jump, climb, and swim and done so with an enthusiasm that only a child could have. She has shown us that she is a fiercely independent and stubborn little girl who won’t give up.
In short, she has shown us that the Keira we once knew has always been there.
However, we do not what the future holds. So far, there is no residual sign of cancer (fingers crossed). The rare auto-immune disorder called Opsoclonus Myoclonus Syndrome (OMS) is what we will likely spend the rest of our lives fighting.
OMS affects one in ten million children a year. Antibodies target the brain and central nervous system and there is no cure. It is believed to be triggered by the specific type of cancer (neuroblastoma) that Keira had. The only treatments are a combination of various immuno-suppressive drugs that all have long-term side-effects. And even though Keira is doing well now on the treatment path she is on, we don’t know if she might have a relapse at some point in the future.
Since OMS is so rare, it is considered an “Orphan Disease” which means that there is no research funding. Furthermore, there is very little data about this disease simply because there aren’t many known cases to track.
What Are We Doing About This?
We are getting together with friends and family to commemorate Keira’s diagnosis and her battle back with a hike. As we have gotten through this year by taking it one step at a time, we feel like an appropriate theme for this hike is “one more step”, which is how we will continue to live our lives as we do not know what the future holds. The goal of this hike is to raise awareness and funding for OMS research, and also begins our commitment to developing a long-term plan to develop a strategy with clinicians and researchers to better understand and treat OMS.
This year, the donations we get will go directly to funding an OMS conference in England which will bring together doctors from all over the world to better understand this disease.
Please consider making a tax-deductible donation to the Pediatric OMS Research Fund so they can continue their mission and fund research to find the cause and cure of OMS.
Checks can be mailed to Naveen's work address so that we can get Google to match the total amount we raise.
Naveen Viswanatha
1600 Amphitheatre Parkway
Mountain View, CA 94043
Thank you for your help and support.
With love,
Crystal and Naveen