Because we are lucky for many reasons
Nearly 4 years on from Keira's diagnosis, she is doing relatively well. We've had our fair share of ups and downs, including a flare-up earlier this year after we thought we were done with meds. But for as much as we live on edge looking out for any sign of a flare up -- an odd fall on the playground, shaky movements on the iPad -- we're fortunate that Keira lives a "mostly" normal life.
Why? We have no clue. No idea why she has responded to treatment where others haven't. Why she can ride a bike when other OMS kids can't. Why she enjoys reading where other's don't. Nor do we know if this will change. Earlier this year I attended an OMS conference in England and learned that doctors have been able to (1) identify depletion in brain matter for kids with OMS and (2) seen consistent reduction in IQ over time. We also learned that some kids do OK long-term, but they are the outliers. We hope that Keira is one of these kids, but we don't know.
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Help us take luck out of the equation
In June, we hit a major milestone and funded TWO OMS Research Projects. For a disease this rare, it is still sometimes hard for us to believe. But your support, help from the Pablove Foundation, and interest from many doctors and researchers has gotten us to thie milestone and demonstrated what is possible.
Now we're turning our focus to the future. If these projects are making progress, we want to be in a position to continue to support them, and if not, we know there is interest from other researchers who we'd love to support.
Our goal for PAA this year is $25K between Crystal and me. If you can, please consider supporting either of us. |
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| Help us continue to build momentum, interest, and support to continue to sustain and fund badly needed research so that we can take luck out of the equation for kids fighting OMS. You've believed in us this far, we hope you continue to be a part of our journey into the next chapter. |
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With Gratitude,
Crystal, Keira, Akemi and Naveen |
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