24 For Winston
A 24 Hour Run to raise money and awareness of Lymphatic and Venous Malformations
UPDATE: The run has been completed! To read a post-run update go to http://www.winstonrun.blogspot.com/. We are still taking donations. Just click on the "To Donate" button above for more information. Please read below or the post-run update to learn about Winston and his condition and stuggles. And please donate. Chris and Jen still need your help!
Back in February, my good friends Jen and Chris had their first child, a boy named Winston. Winston was born with two rare complex malformations called Lymphatic and Venous Malformations. (Click here to learn more.) Lymphatic malformations are varying sized cystic abnormalities of the lymphatic system occurring in perhaps 1 in 10,000 births. To understand exactly what Winston is going through, I asked Jen to write up a short synopsis:
Winston has to endure a feeding tube that he may or may not ever be able to get rid of. He has a tracheostemy to help him breath that gets changed every couple of weeks. Those two things we hope he will lose in time but for now it is an indefinite fixture in his life that is necessary in order to guarantee him an airway and nutrition. Due to Winston's condition, Chris and Jen qualified for 16 hours per day (in home) nursing care. The nurses are not always the same person and Chris and Jen often find themselves having to train each new nurse that comes to stay at their house. There is so much that is not known about these malformations.
Many of Chris and Jen's friends in Kansas are doing what they can to help in regards to day-to-day life. Some bring meals, some help during the hours that they are not afforded nurse care and others come by to complete household chores that are often left unattended to as Winston's care dictates their full attention. Since I live in
Winston is in need of care 24 hours a day. Obviously that is 24 hours a day, every day, every week, month, etc. What I am going to do is run for 24 hours. On Friday, September 18 at
1. Donate prior to my run (instructions below).
2. Pledge to donate a set amount per mile that I complete in 24 hours. (I will update this site after the run with total mileage completed, etc.)
3. (For our local Colorado friends) Join my support team! Help out my wife, Rachel (and our newborn daughter Avery), with food, drink, extra clothes, etc. and/or join me for a portion of the run. The route is linked below (will start in
Click here if you'd like to sign up to run (or bike) a portion with me!
(If you'd like to come out and support me during the run)
To donate, send a check to: (make check out to "24 For Winston")
24 For Winston
4722
Or use your credit/debit card with this Paypal link:
I sincerely hope that you can find a way to donate any amount of money. My wife and I had our first child on August 1 this year and I cannot even begin to fathom going through a percentage of what Chris, Jen and Winston go through on a daily basis. Their lives have truly been turned upside down. Thank you in advance for any help that you can give.
Leave a message below for Chris, Jen and Winston!
To get more of an insight of what Chris, Jen and Winston are going through, below are some more answers to questions I asked Jen:
How have your lives have changed due to Winston's condition? (minus regular baby stuff)
Wow………that’s a crazy one! Chris and I have now become part-time medics besides first time parents. Never in our wildest dreams did we think we would know was much as we do about lymphatic and venous malformations and a room full of medical equipment. Our days consist of cleaning medical equipment, feeding our son through his mic-key button, suctioning his trach, training nurses on how to care for our son, trach changes, and much more on top of the regular newborn baby stuff!! Winston needs to be constantly supervised due to his trach and has 16 hours of nursing care a day. So from
Additional expenses and treatments due to Winston's condition
The larger expenses occur as we begin to travel for Winston’s specialty treatments. Dr. Waner and Dr. Berenstein at New York’s Vascular Birthmark Institute and
Our daily expenses include up-keeping a nursery/medical room. Besides the medical supplies which are thankfully supplied through health insurance and Medicaid, we have to provide a constant stream of simple items such as paper towels, hand sanitizer, trash bags, hydrogen peroxide, white vinegar, dish soap, etc. to help them run a clean environment. Plus we have a pile of medical bills from his 7 week stay in the NICU. We have healthcare and Medicaid but not everything is fully covered.
Anything additional you can think of.
We are only asking for help because we cannot get through this and help Winston on our own. But not only that, we want to take this opportunity and use it in a positive way. After we reach a leveling point, we want to start a website of our own. When we needed it, there was nothing out there that made us feel hopeful. So I want to have online resources for parents that can provide that one little bit of hope you need to get through such a traumatic event. Not only that, I want to create books that help parents, siblings, the child him or herself, realize that it’s not the end of the world when it comes to cystic hygroma, a trach, or a feeding tube. Life does go on and it’s all about how you look at it. With the out of town specialists, we just have to know that we tried everything we possibly could to help him get through this and take it as far as we can. And at the same time we also have to enable him to have the self confidence to hold his head up high whether the treatments work or not!!
Jen and Chris will check this site regularly so feel free to leave them a message below: