I hope you faithful readers will indulge me slipping in a little plea in between my recap of the Design Star Season 4 finale and my interviews with Dan Vickery and Antonio Ballatore.
Many fans of Design Star have been scratching their heads, wondering, wassup with last season’s winner? Why hasn’t Jennifer Bertrand gotten her big, splashy HGTV show? Well, it turns out, this girl has had her hands full.
You may have noticed Jen was pregnant while taping her appearance on HGTV’s Showdown vs. Kim Myles, Season 2 winner of Design Star. Jen and her husband had a little boy back in February, named Winston. (Cue the “congratulations” and the “awwww’s!”)
It turned out that Winston was born with two rare complex malformations called Lymphatic and Venous Malformations. Lymphatic malformations are varying-sized cystic abnormalities of the lymphatic system occurring in perhaps 1 in 10,000 births. To give you the low-down, Jen has written this:
“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 that it was something that could have been lopped off after he was born and life could go 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!!! 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. He stopped breathing on us and turned blue due to blood from his tongue occluding his airway…scariest moment of our lives!”
Winston has a feeding tube and a tracheostemy to help him breathe that gets changed every couple of weeks. He may eventually survive without those two things but for now they are an indefinite fixture in his life that are necessary in order to guarantee his airway and nutrition. Due to Winston’s condition, Jen and hubby Chris qualified for 16 hours per day of in-home nursing care. The nurses are not always repeats 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 his parents’ full attention. A friend of theirs in Colorado wanted to help too, but geography prevents him from assisting the Bertrand family in person.
So Chris Justice has decided to help them another way.
To symbolize the 24-hour care that Winston needs every day, every week, month, etc., and the 24 hours a day Jen and hubby Chris are affected, their friend Chris is going to run for 24 hours.
On Friday, September 18 at 2pm he will start running in Boulder and will not stop until he reaches Denver, at approximately 2pm on Saturday, September 19.
HOW CAN YOU HELP?
1. Donate prior to Chris’ run.
2. Pledge to donate a set amount per mile that he completes in 24 hours. (He will update his site after the run with total mileage completed and other details.)
3. If you live in Colorado, you can join Chris’ support team! Help his wife, Rachel, with food, drink, extra clothes, etc. and/or join him for a portion of the run. The route is linked from the 24 For Winston site. You can sign up to run or bike with him for any portion of the route at specific times. E-mail Chris Justice at email@example.com if you are interested in taking part and he will get you more information, or you can sign up at 24 For Winston.
To donate, send a check made out to “24 For Winston” to:
24 For Winston
4722 Edison Lane
Boulder, Colorado 80301
…Or donate via PayPal link from 24 For Winston.
All of your money goes directly to Chris and Jen Bertrand for use with all things Winston-related. None of the money goes to their personal account.
You might think, “she’s a TV personality, how can she need money?” The truth is, that all hasn’t kicked in yet. This is a family like any family living next door to you who may be struggling with astronomical medical expenses.
Here’s an interview with Jen that Chris Justice conducted, to give you a little insight into what Chris, Jen and Winston are going through:
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. And 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!!
Good luck to Chris Justice this weekend, and best wishes to Chris, Jen and Winston Bertrand!
Via 24 for Winston