24 For Winston

2009-05-08T14:38:00.007-06:00

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:

"It wasn’t until the day Winston was born that we knew exactly what we were up against and the diagnosis is always evolving as we learn more from specialists. His previous diagnosis during pregnancy was something that could have been lopped off and life could have gone on. But that was not to be our path……..lymphatic and venous malformations are something that can only be managed and never fully cured. How did he get it? Pure, pure luck………there is no reason it happens. As Winston was developing in the womb, his lymph nodes never fully sealed.. Thus causing the lymphatic fluid to channel into good muscle tissue and create caverns of liquid. When you work on one cyst, they say it’s like squeezing a balloon and the fluid goes somewhere else. The venous malformation is similar to a lymphatic malformation only it involves blood and the veins……we’re still learning about that one! We only just found out that he had a combined case! Winston is like his mom and likes to go big! Who wants to have one malformation when you can have two!!! J Some days are better than others in terms of his swelling. And some days we have “good tongue days” and “bad tongue days” depending on how swollen it is. On a “bad tongue day” he has problems keeping his tongue in his mouth and it looks like a hamburger patty. Winston had his first surgery three days after he was born where they cut him from ear to ear to try and remove two macro cysts and put his trach in as well. A week later, they cut him open once again to put a feeding tube in. And two weeks later, a needle was inserted ten times into his face to inject doxycycline into the cysts. That doesn’t include the fact that his birth involved thirty people and he had to start life on a ventilator. And just to add more excitement, Winston thought it would be fun to make Chris practice his CPR and he stopped breathing on us and turned blue due to blood from his tongue occluding his airway……….scariest moment of our lives."

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 Colorado I am not able do any sort of "hands on" help that the locals in Kansas can do. And that's why I've brought you here.

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 2pm I am going to start running and I will not stop until 2pm on Saturday, September 19. This will be symbolic of the 24 hours per day that Winston needs attention and the 24 hours a day that Chris and Jen are affected. 24 hours of running will hurt, but the pain will go away. Taking care of Winston plus all of the emotional and financial trauma is every day for Chris and Jen.

How can you help?

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 Boulder and end in Denver). You can sign up to run (or bike) with me for any portion of the route at specific times. E-mail me at mizzoutigers12@yahoo.com if you are interested in taking part and I will get you more information or you can sign up below via the link provided.

Click here if you'd like to sign up to run (or bike) a portion with me!

Click to view my route:

(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 Edison Lane
Boulder, Colorado 80301

Or use your credit/debit card with this Paypal link:

(After you login (you must have a Paypal account), click "send money" (then enter my e mail address of (mizzoutigers12@yahoo.com,) click on "personal" and then indicate "gift." E mail me directly if you have trouble with this step.)

All of your money goes directly to Chris and Jen for use with all things Winston related. None of the money goes to their personal account.

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 9am-5pm we have a nurse as well as from 10pm-6am. And we cover in between as well as during. The huge misconception is that people think when you have a nurse you just hand him off and your job is done……not the case!! We are hands on parents and aid in the care of Winston. A lot of things that deal with his trach are a two person job. Not to mention we have had many nightmare stories from working with private home nurses………..that’s a whole other email! You never fully rest easy when he’s in the care of others. As well as, the fact that you never relax fully when you have a constant stream of nurses you don’t know constantly in your house at all hours of the day.

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 Roosevelt Hospital are the best of the best. Winston has already seen them once and had two treatments while he was there. They strongly suggest that he have a year of aggressive treatments due to the involvement of the cysts in his mouth and tongue. A treatment consists of sclerosing treatments of doxycycline and bleomyecin and possibly some resectioning of his tongue to de-bulk it. Winston needs to have treatments every 6 weeks in order for them to attack the cysts and stop any malformations of the jaw growth due to the fact that his lips do not touch most of the day. Dr. Waner out of New York flies all over the world to help people with lymphatic and venous malformations. We have only begun to uncover what all it will entail to help Winston. Most cases we have read online, after a few years the children can end up losing their trach and feeding tube which they feel is possible for Winston. But every single child and every single cyst is different.

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:

Contact Us

2006-01-01T14:20:00.002-07:00

For all inquiries related to this run--including media and donation support--please contact me at:

mizzoutigers12@yahoo.com

or

Chris Justice
24 for Winston
4722 Edison Lane
Boulder, Colorado 80301
Cell phone 303-885-3507

Join the Team!

2006-01-01T14:03:00.004-07:00

Do you want to help raise awareness and fund raise for Chris, Jen and Winston, but the idea of running for 24 hours isn't what you had in mind?

You can still be a part of the team! Here's how:

For friends in Colorado
Help out my wife, Rachel (and our newborn daughter Avery), with various aspects of the run: including food, drink, extra clothes, etc.

You are also welcome to join me for a portion of the run. The route can be found here, but I will start in Boulder and end in Denver. You can sign up to run (or bike) with me for any portion of the route at specific times.

Click here to view and sign up for a portion of the run!

Click here to read more about the run and see the route!

For our friends outside Colorado
While I know each of you can't be here in person, your support of this run can be done in many ways. Not only by a donation to Winston's fund, but by your continued encouragement and support!

E-mail me at mizzoutigers12@yahoo.com if you are interested in taking part and I will get you more information.

The Run and the Route

2006-01-01T13:41:00.010-07:00

Winston is in need of care 24 hours a day.

Obviously that is 24 hours a day.

Every day.
Every week.
Every month.
Every year.

To show support for Chris and Jen, and to raise awareness--and financial support--I will run for 24 hours. Non-stop.

On Friday, September 18, 2009 at 2pm and I will not stop until 2pm on Saturday, September 19, 2009. This will be symbolic of the 24 hours per day that Winston needs attention and the 24 hours a day that Chris and Jen are affected.

There will be a post run BBQ at a local residence and Chris and Jen will be in attendence. Check back here for more info.

My 24 hours of running will hurt, but the pain will go away. Taking care of Winston plus all of the emotional and financial trauma is every day for Chris and Jen.

You can check out the route I plan to run here:

How To Donate

2006-01-01T13:03:00.008-07:00

If you are interested in making a donation to help Jen & Chris with the care of their son, Winston, here's how:

Online Through Paypal
A PayPal account has been set up to donate using credit or debit cards. To donate, click the PayPal linkOr use your credit/debit card with this Paypal link:

(After you login (you must have a Paypal account), click "send money" (then enter my e mail address of mizzoutigers12@yahoo.com), click on "personal" and then indicate "gift." E mail me directly if you have trouble with this step.)

Checks
Please make checks payable to: 24 For Winston

Send them to:
24 For Winston
4722 Edison Lane
Boulder, Colorado 80301

All of your money goes directly to Chris and Jen for use with all things Winston related. None of the money goes to their personal account. I sincerely hope that you can find a way to donate any amount of money.

Thank you in advance for any help that you can give!