Karen’s Front Row Experience: Trevor Noah, Baltimore, MD
Illness: EDS, Clotting Disorder, Mast Cell Activation Disorder, Cerebral Vascular Insufficiency, Intracranial Hypertension, ACTH Deficiency
Date: November 4, 2017
She is a sweet young woman who is more knowledgeable than her years.
Meet Karen Richards.
Karen is a daughter, sister, and friend. She loves writing and taking photography, chocolate, the smell of Lavendar and the warmth of Summer!
Karen and her parents worked tirelessly until age 6 (2006) to finally discover her diagnosis. It was found that she had Ehlers-Danlos Syndrome (EDS), Clotting Disorder, Mast Cell Activation Disorder, Cerebral Vascular Insufficiency, Intracranial Hypertension, ACTH Deficiency and POTS. Maybe not in that order by diagnosis… but she has been through a lot in her 17 years.
All of these health challenges keep Karen on her toes. She has faced death a couple times and continues to have a zest for life! She has a connective tissue disease with many common complications that you can get from it. All her joints are lose and she has had multiples surgeries on her brain and her joints.
Her most life threatening complications are her Mast Cell Activation Disorder which causes her to have random anaphylactic events (apart from her already 20 known allergies) that requires multiple epi pen usage. She has frequent flare up’s and about once a month her throat closes so much she can not breath. In addition to that, her body has a propensity to throw clots. She has clotted off her left internal jugular vein and has had 5 stent placements in various vessels in her brain.
She also has EDS which in her has caused high intracranial pressure (requiring a shunt to relieve the pressure), and multiple fusions as at several points, her neck was actually dislocating due to loose ligaments.
Finally, she has POTS which simply stated means when she gets up from sitting or laying down she is extremely dizzy. UPDATE: Karen found out on January 17, 2017 that the pressures inside her brain are on the high end of normal. She currently has a shunt put in for that reason that is supposed to keep the levels lower than normal. She is having surgery on February 2, 2018 to have her shunt replaced.
Karen along wit her family; Mom (Aurora), Dad (Stephen), Brother (Alexander) (and many animals, as her Mom is a vet!!) moved from Texas to Massachusetts to receive more centralized care.
Over the past 11 years Karen and her family have learned that they need to just breathe and go about life as normal as they possibly can. Things happen regularly to Karen and they have learned to deal with them as they come. They certainly don’t want to live in a bubble but emergencies do often occur.
Karen knows how to laugh at her situation and ignore it. For instance, she dislocated her fibula in Boston. She wasn’t able to walk but didn’t want to go to the ER. So, she had her friend prop her up against a tree and instructed him on how to pull her leg and get her fibula back in, then she went on about her day!! This shows you just how resilient Karen is ☺
Karen has taught herself to not compare herself to others. She has learned that doing that has only made her feel sorry for herself and it does not help her with day to day challenges. There is nothing Karen can do about the bad things in her life. If she focuses on the bad then she won’t have positive things happen. She just needs to continue to fight for her health. She said “Imagine being in the hospital 50% of your life… it can easily get you down.”
Emotionally Karen does well but she does get frustrated by her limitations. Getting behind in school causes a lot of anxiety for her. Physically she has good and bad points but she continues to push to try and take advantage of her life.
It’s easy to see how brave Karen is and also that she is most definitely unstoppable!
Karen and her family heard about Front Row Foundation from Brianna Greenspan who is a raving fan of Front Row Foundation. Karen has also interviewed Jon Vroman, founder of Front Row Foundation for her blog. Karen was chosen to have a Front Row Experience in 2014, but sadly was not able to go on her event due to being hospitalized.
Karen’s ultimate dream event is going to see comedian Trevor Noah Live!
Karen has only watched Trevor Noah on Youtube and actually thought it was silly to go see a comedian live prior to her introduction to Trevor. She adores him! She told us that Trevor Noah is her favorite human being. She feels like he is an engaging type of funny. He is Funny in a unique kind of way.
Check out Karen’s reaction when she found out she was seeing Trevor Noah Live!
The night before the event Karen and her Dad, Stephen, flew into Baltimore, MD from Boston, Massachussets. They took an Uber to the Kimpton hotel and were impressed by the beauty of the hotel. When they arrived at their room they had a Bouquet of Flowers, Cheese platter and bottle of wine courtesy of the Kimpton. The best part of the hotel room was the little fish bowl on the nightstand. Joreen and Bex, the Event Directors for FRF were unknowingly in the adjoining room. Karen heard Bex yell out “What hotel room gives you your own pet fish!?!”
The day of the event Karen and her Dad had some downtime before the interview and Karen was working on homework to try and remain caught up in her classes. That may be one of the more difficult things is between Dr’s appointments, surgeries and hospital stays… just trying to remain on track with all her classes.
That afternoon Bex and Joreen arrived to Karen’s room bearing gifts, hugs, and love! Time for our first interview and sharing some love with Karen. Karen sat down and started her interview with us… telling us her story of strength through these 17 years of her life. Things definitely haven’t been easy… but as we could definitely see; Karen is a fighter and will remain so! She has a spunk that she has learned to carry with her on a daily basis to keep fighting through even the biggest challenges!
After the interview Karen opened up a few gifts from the Front Row Family! The first gift Karen opened was rather special. Front Row had a leather Journal personalized with Karen’s name and quote that said: “I haven’t been everywhere, but it’s on my list.” Karen is also a Beatles fan and she opened a necklace that had two hearts. The first heart said All you need is love, the second said love is all you need. She loved it! She also opened up some chocolate that she was happy to share with her brother on the trip home! Last but not least she opened up a card that had a picture of a gift that Front Row would mail out to her as it wouldn’t fit in her luggage. It was her favorite Author: F. Scott Fitzgerald and it said: “You are the finest, loveliest, tenderest, and most beautiful person I have ever known – and even that is an understatement.”
We were ready to finish the interview and head to dinner… we told Karen we were going to eat at Capital Grille! She had never been “to a fancy restaurant” and she was very excited!
We went downstairs and walked out front and Karen’s “Chariot” had arrived! There was a beautiful shiny black limo waiting for us all. We took some Front Row pictures of Karen and Dad in front of the limo, got in and headed to dinner!
Once we arrived they had a beautiful table waiting for us; we were just missing Mom and Alex. We ordered drinks and Karen was starving! Karen ordered a salad and we ordered appetizers to get us started while we waited.
Before we knew it Mom and Alex arrived! You could see in Karen’s face how happy she was the family was all together! The relationship Karen and Alex have is pretty awesome! They are so very, very close and you could feel Karen relax when he and Mom were near. We all ordered our meals of Scallops, steak, prime rib and truffle fries… dinner was superb! To top it off Karen received a beautiful dessert with the writing “ Best Day of my Life” enscribed on the dish.
Before we knew it…. It was time to head over to the Hoppodrome theater to see Trevor Noah! It was now raining and we were hopeful it would stop before standing in line! We went inside and walked down to our seats! We were not only in the “Front Row” we were in the PIT! We could practically touch Trevor Noah! There was an opening comedian who was awesome and even called out Alex at one point which really got the family laughing and engaged! Trevor was awesome and kept us all on our toes! The show went by way too quickly and kept us wanting more!
We headed back to the Kimpton Hotel and had our closing interview in the lobby of the hotel. We interviewed Mom, Aurora and Karen. They were so appreciative of this evening. Mom said it was nice to just have a normal night and not think about everything else that is always going on. Everyone had a lot of fun and kept saying thank you! We finished out the night with big hugs outside our hotel rooms and said our goodbyes! Another beautiful family to add to our ever growing Front Row Family! Our hearts were full!
You are such an amazing young woman! We were super excited to experience this Front Row Experience with you! We love your family and we are so thrilled that you enjoyed your time with us! Keep staying positive and remain focused on all that is important ! Keep Living Life in the Front Row – It’s a Forever Thing! \o/
Bex and Joreen