This is Candi, Clara's mom. I am sitting at Children's National Medical Center, as Clara lays on a bed in front of me. We will be here until Wednesday. Last September 2016, we saw Dr. Dabari at CNMC, and he wanted to run a bunch of gastric tests on Clara. I won't go into much detail on all of the tests, just that there will be anesthesia and there will be a tube put down Clara's throat. EDS/POTS kids have a lot of gastric issues, some get bad enough that they have to go onto tube feedings. Clara has many Zebra friends that have gotten to that point. She is not there yet. I am writing this blog post for her today, because honestly, she just is not feeling up to writing. She wants to rest and play on her phone, and be as normal teen as she can be, which to be honest, is 100% okay with me. She does a lot for other kids 100% of the time, so she too, needs a little down time. We spend a lot of our time in hospitals nowadays as her little brother also has EDS/POTS/MCAS, its slowly and unfortunately becoming a second home to us. I am grateful for all the very nice staff, nurses, and doctors that always have a caring touch, even when the kids aren't exactly in the mood to be stuck with yet another needle. They didn't choose to be handed this deck of crappy cards, but they manage the game pretty well. And that is how I would describe it at this time. It is like a poker game, always trying to stay one step ahead of the crappy dealer named EDS, always trying to guess what the next card dealt will be. Sometimes we get an "ace" and sometimes we get a bust. We try to stay upbeat most of the time, but there are moments that we all sit in the car and just cry. It gets overwhelming as a parent to see both my kids suffer on a daily basis, every time I hear them say they are in pain, I panic on the inside, because it could be something major, or it could be something minor, the issue with this disease, you really never know which one it is. As a parent, you really don't get much sleep because it is scary never knowing if your kids will wake up the next day with something else wrong. Another organ being affected, or another medicine being added to the ones they are already on. I have never been a good one about taking medicine, so this has definitely put into perspective the need for that (please do not send me emails about how some magic herb will fix my kids-it won't and I won't). We just need to all keep fighting and keep educating, keep telling the story, get people involved. And people, hug your kids. At one time my kids were "normal" until this horrible disease took over. We, at one time, were just as carefree as everyone else, until this monster came into our lives. At one time, my kids ran and played like everyone else, until they couldn't keep up. So from Children's Hospital in DC, love your babies, take advantage of the time you have with them, enjoy the moments they are not sick, because you could be sitting in the same hospital chair I am a few years later, wishing things were just simple and life was easy. God knows that is where I am right now, because I have been praying on a daily basis to go back to those days, even if it is only once in a while, where its not giving my kids a ton of meds so they can survive... There is no cure for EDS, POTS, or MCAS, there are only really crappy treatments that do not really work... There is no day my kids will wake up and be healed, only days of wondering what other system will fail and praying that today's health will last until tomorrow, knowing that as of now, today is the healthiest my kids will ever be. Time is not our friend as with time, more health problems, more joint dislocations, more organ issues, with time, they become worse, the meds stop working, and with time comes more worry and stress. We are fighters though. We will fight until the last second of the last day. I will fight for my kids. I will fight against the disease, I will fight for better treatments, I will fight when they are not able, I will stand up against EDS and its horrible sister diseases. I will fight with doctors when I have to, I will fight the insurance companies, I won't stop until we have a cure because there is no other option. So to all the other Mommys that are Zebra Moms, I know your stripes, I see your pain, I live it every single day. You are not alone.
As Clara would say "I will live my life to the fullest, until I can't anymore"...
From this Zebra Mommy to all of you, keep fighting folks
August, 30, 2016
Hello everyone! I can not believe it has been officially a year that the Foundation has been up and running. I am very thankful to my Mom and Dad for ensuring our first year of this was highly successful. My Mom in particular found a way to make every idea that I had come true. Thank you Mom!
We are very excited to be growing our organization in leaps and bounds. Some of our Facebook posts have reached 10,000 views! Can you believe it? I never imagined that when I first started the Foundation.
Now, as we gain more momentum, it is important for us to also grow our Board of Directors, because its a big job being able to help the large number of people that have EDS!!! So I am happily announcing we will be adding new Board members to the Director level and other official associates to help us help you!
Please stay tuned as these are great announcements coming!
`Clara Lemarr, CEO/Founder
April 10, 2016
This is Clara and my very first blog entry!
I am very excited to say that we have sold over 100 tickets to the Zebra Ball! I am looking forward to seeing everyone there. I am hoping that everyone will be able to make it. I will go around and try to meet everyone that i can and have a nice conversation with them. We have so many things planned for the Foundation. We are kicking off soon the Parent Advisory Board and Junior Advisory Board. I am really hoping that this will help us help other people! You can always reach out to me either through my page here, or send me an email at ClaraLemarrFoundation@gmail.com. We try to get responses back as quickly as possible, it just depends on what we have going on that week. This weekend was a good weekend. I was in a swim meet on Saturday, then spent the day sleeping until that night, when my Dad and I went to the Father Daughter Dance for Girl Scouts. I had a good time and I think my Dad did. We have gone together every year for the past several years. Today I was able to get more homework done, and then we went to the Invisible Awareness Support group meeting where there was a LARGE turn-out. It is amazing how many others are having the same struggles I had and the hard paths they too are having getting properly diagnosed. I don't understand why so many doctors in our area do not understand what EDS is or why EDS does the crazy things to our bodies. Believe me, no one wants to have these issues, I know I sure don't. I would do anything to go back to when I could actually make it through an entire school day without being so sick and so tired that I can't stand up straight, or in so much pain I can't focus. I would do anything to be able to just go out all day and ride my horses, or even train my OTTB. Maybe someday there will be a cure, and these other families and my own will not have to suffer anymore with all these issues. My Mom always says, "There has to be one smart person out there somewhere in a lab that can find a cure for this, it is just a matter of finding that one person"... I hope we find that person soon. Until then, we just need to rely on each other, educate others, work with our doctors and medical teams, work with the schools, and spread the word that YES WE ARE ZEBRAS, but WE STILL HAVE A VOICE. Just because I don't feel good and I have a disease, doesn't mean I don't want to do the same things other teenagers are doing, it just means I have to take breaks and find the happy spot where I can go and be normal, without causing myself to be stuck in bed for 2 days afterwards. I haven't found that balance yet.
Well, it is late, and I need to get some sleep for school tomorrow! Hope to see you at the AWESOME ZEBRA BALL!!!
CEO & Founder of the Clara Lemarr Foundation
The Clara Lemarr foundation was established to help provide awareness and education for the community for Ehler's Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and associated issues with these two genetic disorders such as Mast Cell Activation. We do not provide medical advice and any information on our page should be reviewed with your own health care team before taking any action.
We were founded in August 2015, after our Founder-Clara Lemarr was diagnosed with POTS & EDS. She is an incredible young lady whose goal was to ensure other children did not suffer for as many years as she did before diagnosis.
We do not have any paid employees, everyone is volunteer only, so therefore unlike other foundations, 100% of the funds received goes right back out to help EDS patients, spread awareness, and work in the community.
Clara does do speaking engagements, but we ask that you email us your requests to ClaraLemarrFoundation@gmail.com with your requests. Please keep in mind depending on her health and her very busy schedule, she does her best to acomodate everyone, but sometimes she is not available.
We have three large activities happening this year:
Zebra Ball-Black Tie Gala and concert that will be used as our number one fundraising event to help support the other two initiatives-the EDS Conference scholarship program & Zebra Camp.
EDS Conference scholarships are all based on how much funding we have available at the conference, but we will make as many scholarships available that we can.
Zebra Camp is a 3 night-4 day camp that will be held in Spotsylvania, VA, August 4-7, 2016. It will be open this year for 20 participants. All counseling staff will be trained on EDS and have have background checks.
We hope to grow all the programs over the years so that we are able to reach as many people as possible.
We are also in the midst of forming the CLF Parent Advisory Board-open to parents of children whom have been diagnosed with EDS that are under the age of 18. This group will assist in determining what the Foundation will function on in the community for awareness prorgrams.
We will also be establishing a CLF Junior Advisory Board for those who have EDS 18 years of age and under, who want to work directly with Clara on community service and awareness programs.
We are very excited about all of these opportunities and if you would like more information, please send us an email with the topic highlighted in the subject line, and stayed tuned for some AWESOME announcements coming after APRIL 15, 2016.
Candi Lemarr, CMO Clara Lemarr Foundation