In Megan’s words:
Our family’s relationship with Rady Children’s began on Sunday, April 30, 2017. The chain of events on this day are somewhat of a blur to me and I have tried very hard to forget them. I woke up to two perfect little girls, my two-year old Sydney and my 8-month old Reese - the day ended with Reese fighting for her life.
I remember the doctors who greeted me after the ambulance ride and the concerned looks on their faces. I was in shock, complete disbelief and didn’t grasp how serious the situation was. After all, just yesterday my baby was completely fine, but, on April 30, 2017, her heart was beating uncontrollably, up to 300 BPM. It didn’t make sense to me. I remember the nurse calmly telling Jay and I that it was time to leave the room because Reese was starting to code, followed by CPR and emergency surgery to put her on ECMO (life support). Unless you’ve been through this, you don’t know the pain, you can’t even imagine it. It is an indescribable torture seeing your child in this state. I would wake up every morning in extreme panic asking if Reese was still alive. It felt like a nightmare and I kept wishing I would just wake up.
I so wish my introduction to Rady Children’s had been smoother, less traumatic, perhaps stitches or a sprained ankle. But no, Reese had other plans, this was her story and it was meant to be this way. Our introduction was shocking, stressful, depressing, life changing, and most of all miraculous. Her outcome is an absolute dream come true. Reese’s condition, histiocytoid cardiomyopathy, is a rare arrhythmogenic disorder; less than 100 patients have been documented. Trust me, do not Google it because Google makes you want to x the page out immediately and throw your computer out the window. It was that scary. Reese literally arrived at Rady Children’s just in time to be saved by the most talented doctors and nurses. Had we waited an hour to take her to the Emergency Room, she probably wouldn’t be here. Dr. Yeh, Dr. Murthy and Dr. Perry are our forever heroes and our family adores them. Her most likely outcome was a heart transplant and we received the most miraculous outcome, Reese coming home to us and taking medications several times a day, all day, to keep her heart rhythm normal. We had some hiccups after her first admission and were in and out of the hospital several times until she was 1 1/2. Since then, we have received continuous good news after each check-up from her electrophysiologist, Dr. Perry. Of course, after such a traumatic event I questioned every bit of good news with the “what ifs” and remain cautiously optimistic. She was weaned off her heart medications over the past couple of years and has officially been medicine free as of June 2020. Rady Children’s not only saved Reese, but our entire family.
In Jay’s words:
Now, to Dance Marathon. When we first participated in SDSU’s Dance Marathon a few years ago, we weren’t sure what to expect. Our family had shared Reese’s story at a few fundraisers – it’s one of the few ways we feel like we can actively give back to Rady Children’s – and thought this would be a quick event to share her story and be on our way. Boy were we wrong! It was one of the most amazing nights our family has experienced, and one of the first outings as a family since the hospital. To say we were blown away was an understatement.
We were blown away by the students who went out of their way to make our girls feel like absolute rock stars everywhere they went…high fives, dance circles and words of encouragement every step they took. They were the center of the universe with a positive focus on the future rather than rehashing the heartbreak from the past. It was Reese and Sydney’s world and everyone else was just living in it for that one special hour.
We also came to understand this was the culmination of a year-long effort by these young leaders rather than a one-night event. The amount of money they have been able to raise through grassroots efforts is amazing. As we have become more involved, it’s clear the entire DM team are humble stewards of something special, and deserve a ton of credit for what they’ve accomplished. Their entire focus is on the kids – their “For The Kids” slogan couldn’t be more true. I don’t think they make a single decision with the ‘fundraising’ side of things in mind; everything they do is centered around whatever special little warrior they are honoring and catered to making that kid feel like the most special child on the planet. It’s 100% pure. And I think that is one of the reasons their fundraising efforts have been so successful.
It makes me proud to call myself an Aztec alumnus and our family is humbled to be included in the amazing work they continue year after year.
FOR THE KIDS!!!
- Megan and Jay, Reese and Sydney's parents