The Takeovers Have Begun
Updated: Mar 17
The Halle Grace Foundation Blog is going to be taken over periodically the next few months. I am so excited to welcome a few "Guest Bloggers" who will be sharing their stories of living with chronic illness in childhood or being a parent of a child with chronic illness. Why is this so important? Well, one of the goal's we have set up to honor Halle's legacy is to educate future medical professionals on what life is like for the kids behind the diagnoses. To share with the world, the human side of medicine. My hope is that, together, we can build a more accepting world for people with disabilities and chronic medical conditions. We just need to take the time to listen and here their story.
This week's story comes from Ashley Valenti, who has graciously offered to be our first guest blogger! Neeley met Ashley at Camp Boggy Creek. Boggy Creek is a seriously fun camp that offers offers children and teenagers with serious illnesses & their families a free, safe and medically-sound camp environment. Boggy Creek allows kids to just be kids and leave some of their medical worries behind them....but most of all Boggy has given my kids some amazing friends to connect with - Ashley being one of them. So welcome her with open arms and take it over Ashley.
"So I will be honest, I did not know how to start this due to the fact that I feel my story is kind of all over the place. But I was reminded by a dear friend that this is real. So I will share everything in full transparency. My journey started when I was 5 years old. I was diagnosed with CVID, an immune deficiency. I started receiving IVIG infusions when I was 8 and will be on those for the rest of my life. At the age of 9, I was then diagnosed with Juvenile Arthritis. But things started to really get intense when I was about 12 years old. I was sleeping 15 hours a day, I was severely underweight for my age and height, I was very fatigued, I started losing feeling in my legs, I got full after eating 2-3 bites of food, my bladder started losing function and so much more. Everything was failing and I didn’t know why.
2016 was a life changing year for me. In that year I was diagnosed with gastroparesis, tethered cord syndrome, a ligament wrapped around the bottom of my spinal cord, mild hydromyelia, and borderline chiari malformation. By January of 2016 I had lost all feeling in my legs at this point. During this time I started experiencing doctors not knowing what to do because I wasn’t a “textbook case”. I even had a few doctors start to accuse me of faking my symptoms and referring me to psych. After months of fighting and trying to get someone to listen, my rheumatologist ordered a spinal tap and a full spinal MRI that was 3 hours long. (And not sedated, yikes!) I was finally on a path that would hopefully lead me to answers.
My momma is my hero. She is the sole reason I am alive today. She really is so smart, and
does her research. After much research and many long discussions, we came to the conclusion that Boston Children’s Hospital was the place to get help for my spine. I ended up spending 6 weeks in Boston due to many consults, spinal surgery, and the surgery recovery. Before eventually going to Boston, no one could figure out how to calm my stomach down. I had bile reflux running up my esophagus 24/7, and was admitted basically the entire summer of 2016. After months of “it’s just heartburn” and being told yet again I needed a psych consult, I was finally diagnosed with severe gastroparesis. My stomach is completely paralyzed. Almost immediately after finding out how severe I have it, we made the decision to place an NJ feeding tube. After seeing a difference in a little over 2 weeks, I went into surgery to place a permanent GJ tube. That feeding tube can be such a pain but man oh man that feeding tube saved my life. 2 years later, I also had a Gastric Stimulator placed. That surgery has about a 50% success rate and I am so lucky that I am able to eat all the chicken nuggets and salads due to both the feeding tube and the stimulator.
Fast forward to 2020, I ended up getting COVID-19, and it nearly killed me and saved my life simultaneously. Months after having and recovering from COVID-19, I was in surgery to replace my port and they found I had Superior Vena Cava (SVC) Syndrome. The vein was almost completely blocked and had only 3% blood flow. Two weeks after finding the SVC syndrome, I was in surgery to place a stent in my SVC and the interventional radiology team found a hole in my heart. While that was absolutely terrifying to hear, especially after having many cardiac work ups since 2015 and no one said anything about it, it also saved my life. I had many blood clots sitting on my heart, and if one of them traveled through the hole I would have had a stroke. They closed me up and sent me to cardiology to do a full work up and get their opinion on what needed to be done. After additional testing, they diagnosed me with an Atrial Septal Defect. Two days after the initial attempt to place a stent and the CHD diagnosis, I went back into the OR to close the hole and make a second attempt to place a stent in my SVC. I ended up being in surgery for 9 1/2 hours due to my body throwing clots so they wanted to move slowly, but both surgeries were a success.
After telling most people that, a good amount of them ask “How did you do it?” Or “How do you handle this?” And the truth is, I just do. Unfortunately when it comes to being chronically ill there is no choice. You just have to fight like hell and get through the battle you’re facing. But mentally I think I just tell myself that every medicine, infusion, procedure, test, surgery, etc. is a further step in helping my body and what will then let me live my life I want to live. But I also let myself feel negative emotions. I let myself say out loud “this sucks” when it does. And I think letting myself feel sad, angry, bitter, etc. is what helps me get through the hard times. Before I end this I just want to say a big thank you to Neeley for being such a great friend, and to Jill for asking me to write this. You are all such wonderful people. And thank you for letting me share my story." - Ashley Valenti (18)
Thank you Ashley for sharing a part of your journey with us here at the Halle Grace Foundation. As I mentioned before, one of our mission's is to raise awareness and provide education on what life is like for children and teens living with chronic medical conditions. Your Voice, Your Story, is a gateway for future medical professionals to learn the humanside of medicine. Continue to share your voice with the world Ashley. We can all grow as human beings by taking the time to learn more about each other.
If you know a teenager or parent of a child/teen living with a medical condition, that would like to share their story, please email me at firstname.lastname@example.org