6/30/2014 2 Comments
One Courageous Heart
I don't usually blog about people or share their stories. However, there is a family that lives here locally that has truly touched my life. And I would like to share with you how they have and continue to do so.
I met Dena a few years ago through mutual friends. I then found out that age was also a Mary Kay consultant, which is something I was doing at that time. Through Facebook we got to know each other a little bit better, and it was through Facebook that I got to find out what an incredible woman she really is.
Dena invited me to a Facebook event a couple of years ago entitled Kylee's Cause. It was at this time that I found out more in depth about what her daughter, Kylee, had been going through. I read the details and saw that her daughter had been very sick and what started off with a dislocated ankle has ended up becoming quite the journey. After finding out about Kylee’s Cause I would then follow Dena on Facebook to find out what was going on with Kylee. I would see that Kylee would faint of nowhere and that was devastating to me, so I could not imagine what her mother and entire family were going through. As a mother I could not imagine going through what Dena was dealing with. However, through all of it, I would see she kept pushing and fighting – with big smile on her face. And although she was dealing with all of this, she would still take the time to encourage others and have a very positive attitude, despite the circumstances around her.
Dena was on this journey and determined to find out what was going on Kylee. Although she was dealing with all that was going on with Kylee, she also has a 10 year old daughter and is remarried with a set of twins. Dena's love for her family, her determination and her support system has really caught my attention. Not only was she helping her own daughter, but I saw her connect with other families. I saw her share information and resources and also offer moral support to those other families. She has a huge heart filled with lots of love.
Now I must get to the courageous Kylee. All of these things started when Kylee was 9 years old. It started with a sprained ankle that continuously sprained. Then her other ankle started doing the same thing. Then her shoulders, one by one. After 3 years of back-to-back issues - after going through many fainting spells, loopholes, appointments, testing, doctor and ER visits, they finally got a diagnosis: Kylee was diagnosed with Ehlers-Danlos Syndrome (EDS), which is a collagen disorder. Kylee’s vertebrae slide around, which is also called instability. They are actually subluxing (partial dislocation). This is very dangerous and what is causing most, if not all of her neurological issues (heart rate in fluctuations, extreme blood pressure in fluctuations, inability to breathe, loss of consciousness, etc.). Kylee has stopped breathing completely for 3 minutes (twice) and was blue in her chin and lips area. The longest she has ever been unconscious(in a coma-like state) was 35 minutes! In December 2010 she had a spinal fusion of the top two vertebrae, where they used her own hip along with titanium plates and screws to secure the fusion. This corrected the angle that her head is sitting on and made more room for the bottom of her skull because her brain was cramped without enough room and her brainstem was being flattened. Kylee is 16 years old, and she is amazing! I can say that just about every picture her mom has shared she has been smiling - whether is in the ER, on a machine being tested, sitting in a hospital bed, on her wheelchair. She has remained in great spirits with a smile on her face throughout everything that has tried to come against her.
Recently Kylee has started having some issues. Now they are looking at her C4/C5 (part of vertebrae) for a possible fusion. I had an opportunity to go spend a little bit of time with Dena, Kylee and the entire family before Kylee left to Maryland for more medical treatment a couple of Sundays ago. I understood that Dena had to pack herself, Kylee and 10 year-old daughter to fly out within a week’s notice, so I was very grateful to receive the invite before they left. When I got there I met the entire family and finally met Kylee in person. Shortly after I arrived, the ambulance and Angel MedFlight (www.angelmedflight.com) team arrived. The guys from Angel MedFlight were kind and professional, very personable. They began to ask Dena 101 questions, and she was so on top of things. From the meds that Kylee is on, to her history with fainting, to giving the technicians very specific instructions on what they should do first if she were to stop breathing on the plane and more. There was so much going on, and she remained calm and handled her business and her family. Kylee was as sweet as can be. She was thankful for my support and prayers. She chatted with me and is your typical 16 year-old junior, but very smart and mature.
She was waiting for her dad to come to the house, so he could hold her hand while she got her IV before they put her on the stretcher. And I cannot forget the awesome support team (Go #TeamKylee!) - Kylee's stepdad, her stepmom, all of her siblings, a couple of cousins and her mom's best friend were all at the house getting ready to see them off. When Kylee got onto the ambulance, she held up her arm with a fist, which only showed me even the more how brave and strong she is. Kylee made it to Maryland safely! Once she got to Maryland, her mom posted a picture of her supporting a friend in the hospital, holding her hand while she got her IV (see attached). Dena's love inspires me. She did not and will not stop until she knows that Kylee is being properly taken care of and that she is receiving proper medical treatment. And Kylee's courage and great attitude, in spite of the challenges she’s encountered, amaze me. When I think about them, I think: "Dena's Love and Kylee's Courage." They have truly touched my life.
They have caused me to see life so differently. I think that we take little things in life for granted - like being able to run around freely and being able to breathe, having the security of not having major health issues. I would be a wreck if one of my children stopped breathing for 10 seconds one time, and Dena has experienced Kylee going unconscious countless amounts of times and up to 35 minutes! People complain about headaches and minor scrapes and bruises, and I have watched Kylee keep a smile on her face before and after having her spinal fusion, current medical condition and upcoming treatment. She keeps a smile on her face, not knowing if she will stop breathing out of the blue. After getting to know Dena more, I now know where Kylee gets her strong, brave and positive spirit from.
Both Dena and Kylee would like more people to be more aware of this rare disease that has greatly affected their lives.
As I previously mentioned, EDS is a collagen disorder. Collagen is in about 90% of our bodies from our skin, tendons, ligaments, stomachs, the valves in our hearts and much more. Broken collagen doesn't work well at all. Think of it like this: most people's joints have ligaments that work like elastic bands, stretching and then going back to their original form. With EDS tendons and ligaments are like a piece of gum - they will stretch (and keep on stretching beyond a rubber band) but will not go back to their original form. So a person with EDS can end up with joints that won't stay in place or slide around, heart valves that don't work properly because they become floppy, GERD/acid reflux because the valve in their esophagus gets so floppy and stays open allowing stomach acid to come back up and burn their throat/esophagus. A person can get malabsorption of vitamins, gastro paresis and so much more
For more info about EDS, you can check out: www.ednf.org
6/30/2014 04:54:26 pm
Wow Inez! This is so great! I am just so moved! We are truly blessed to know you! Thank you for sharing Kylee's story and helping to spread awareness about EDS! It means so much to us and everyone else that suffers with it. Thank you so much! <3
7/1/2014 02:26:42 pm
Absolutely my pleasure Dena! <3 Thank you for sharing your journey with me and also allowing me to share it with others. You guys are amazing!!!
Leave a Reply.
Inez Knows ~ Information for Everyone
P.O. Box 51835 | Oxnard, CA 93031 | firstname.lastname@example.org @inezknows on Social Media Sites
Disclaimer: All products, services and events posted on this page are not a personal opinion and/or personal endorsement from Inez Knows.