CCHS is a rare disease. There are at most 1200 diagnosed cases of CCHS in the world. There is no cure. There are no medications. The ONLY treatment is LIFELONG mechanical ventilation. Some with CCHS are vent dependent 24/7. My sister passed away in her sleep after becoming disconnected from her ventilator. It can happen to anyone with CCHS. We need funding support for research, as CCHS receives little funding from the government or pharmaceutical industry.
We need a cure. We need hope for a better future for our kids with CCHS. It may be too late for my sister Lauren, but it's not too late to make things better for my niece McKenna's future.
In Lauren's honor, please consider making a donation not just for CCHS research and education, but to also support the future of her two little girls, McKenna and Elena. All proceeds will be split evenly with the CCHS Foundation (link to information below), and a fund set up for the sole benefit of the education and care of McKenna and Elena.
Please share even if you can't make a financial contribution. Spreading awareness is equally as important.
And if you have a moment, please take the time to read a tribute to my sister, written by my best friend Brienne Walsh - link below.
With Much Love,
Kim and the Savino Family
- Mandie Porter
- Eric Pasinkoff
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