As many of you know, our twins have been dealing with some serious health issues for many years. They are always willing to help out the community, friends, and family by donating their time, money, and efforts. As their parents, we are coming to you to ask for your assistance in any way possible.
They both have been diagnosed by their primary care physician Dr. Rachel Zonca with a very rare non curable autoimmune disease called Stiff Person Syndrome. One in 1 million people in the world will get this disease, but as twins, it’s almost a once-in-a-never chance.
A quick explanation of what SPS is: it’s a rare progressive neurological disorder characterized by severe muscle spasms that can break bones, dislocate joints, and result in life-threatening breathing problems. The impact on the quality of life reaches far beyond the physical – challenging their mental, emotional, and social well-being.
Most days, they both suffer from painful symptoms, some similar and some completely different. The only current solution right now is to have them on a very high amount of Valium. They are both on over 60mg a day, which affects their lives dramatically. They are no longer allowed to drive, work, and simple household tasks exhaust them easily. They have daily balance issues that often result in falls.
Only a handful of specialists are certified to treat SPS. But we received “the” phone call that we had been waiting for: the girls get to see the top specialist in the country. Unfortunately, she is in Colorado, and we will be there for a few days. They will undergo uncomfortable and painful testing, but we should leave there with an answer on how to treat this autoimmune disease and how life will look going forward.
Many friends, family, coworkers, and neighbors have asked how they can help out. In response, we’ve started this GoFundMe to help our daughters with medical expenses, plane tickets, loss of wages and all that comes along with a medical trip that is out of state. Mindy’s husband Ray, Carrie’s husband Angel, and I will be escorting them there to get them through it. If you are able to donate, we are absolutely grateful. If not, prayers, great thoughts, a simple text message, or a call is always appreciated as well. This has been a rough couple of months for our family, but we will all get through it.
Our twins are STRONG, AND WE PRAY THAT THERE IS A CURE ON THE WAY!
Paul and I thank everyone for taking the time to read this. If you have any questions about the fundraiser or the disease, please reach out, and we’re more than happy to answer any questions.
Feel free to share this with your friends, family or on any social media platform. This will help get the word out about their medical condition.
Thank you ahead of time for your generosity,
Paul and Julie Baray