With the holidays coming up around the corner, we have been talking a lot about Christmas lists. My 7 year old son Weston already knows precisely what he wants: a play station, a bow and arrow, and some magic tricks. Since Curren isn‘t yet able to talk, I told Weston he has the important task of coming up with the perfect list for Curren, and telling Santa what his brother wants. We have been running through lots of ideas, but what do you get a sweet 3-year old with a rare neurodevelopmental disorder who would rather high-five everyone in the room than play with toys? There are tons of therapy tools and adaptive equipment that would be helpful for Curren, but that’s really not all that fun for a little guy that already does 9 hours of therapy every week. I asked Weston what he thought the one thing in the world his brother would want for Christmas more than anything else would be, and his answer was difficult - he would want to walk and talk and play with friends.
That really would be the ultimate gift, but how in the world do we get there? The majority of my time and thoughts have been consumed with this idea for over a year now. It’s the reason for the trips to New York and Baltimore, for my husband leaving his job, for the challenging gluten-free diary-free diet, for the midnight googling and worrying, for the pubmed alerts, for the intensive therapies, for the B12 injections - all for the hope that we stumble upon a doctor or researcher or therapy than can level the playing field a bit more and help Curren to achieve his personal best in life. How do we get more research, better management, more treatments, and eventually a cure?
We are not the only family. It is estimated that over 30 million Americans are battling a rare disease today, and half of those affected are children. Of those children, 30% will not live to their 5th birthday. Over half of all rare diseases don’t have a specific foundation supporting or researching their condition (including Curren's condition, HIVEP2 disorder). How do we get cures now?
There is hope today for the future. For my family and millions of others, it is found in the 21st Century Cures Act, which passed 343-77 in the House of Representatives last year, but has not yet passed through the Senate. Chairman Fred Upton (R-Michigan) calls the landmark innovative effort a “once-in-a-generation, transformational opportunity to change the way we treat disease.” Senate Majority Leader Mitch McConnell (R-Kentucky) said that the bill “could end up being the most significant piece of legislation we pass in the whole Congress." This act would not only benefit the rare disease community, but "could really change the face of cancer" according to Jon Retzlaff, managing director of science policy and government relations at the American Association for Cancer Research.
If the 21st Century Cures Act passes, what would it mean for Curren, for others living with a rare disease, and for those battling cancer? it will accelerate the discovery, development, and delivery of life saving and life improving therapies, and transform the quest for faster cures. This will be achieved by removing barriers for research collaboration, by incorporating the patient perspective into the drug development and regulatory review process, by measuring success and identifying diseases earlier through personalized medicine, by providing new incentives for the development of drugs for rare diseases, and by investing in 21st century science and next generation investigators - all while keeping and creating jobs here in the United States. This act could double the number of therapies available for rare disease patients.
This bipartisan act has been years in the making and is supported by hundreds of groups across the patient and research spectrum., but is in danger of not becoming law. There is word that some in Congress are attempting to remove substantial portions of the bill, including the Open Act, which would effectively kill the bill in Congress. A delay in legislation is a delay in life-saving treatment for patients.
If you feel so inclined, please help us make cures a reality for Curren and millions of others! The #CuresNOW page provides many easy ways to promote the 21st Century Cures Act. Please help all those who want nothing more than cures for their loved ones this holiday!
After waiting almost 6 months, we finally have Curren's custom wheelchair. I have to say I have been preparing myself for this moment for a while and anticipated this to be pretty difficult, but instead the arrival of Curren's wheelchair has been completely incredible! His new little ride is so customized just for him. They made a special frame for him where the wheels are actually closer to the front so he can reach them better, The frame is lightweight aluminum for easier mobility, and the rims are carbon fiber mags with only five spokes and a guard to help keep his fingers from accidentally going in the wheels. He's got adult armrests because the kid ones are really small. And it looks incredible - it's lime green with electric blue wheel castors and front wheels that light up! But best of all, Curren loves his new wheelchair and it is going to open up a whole new world for him!
Along with this awesome new setup comes something even more moving than the wheelchair, Although my grandpa is no longer with us, his spirit and memories will be with us everyday now. We are blessed and honored to now have my grandpa's wheelchair accessible van, where we can just push Curren up a small ramp and lock the wheelchair down into the floor tracks in the van, His wheelchair even has a five-point harness system to keep him safe during vehicle transport. My heart is so happy for all of our new wheels and the opportunities the wheelchair and the van will bring to Curren, Here's to many new adventures!
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I am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life.