Story
Hi, my name is Hyrum “Chase” Gutierrez. I am 19 years old now, but I wasn’t supposed to make it through the 1st trimester of pregnancy. Can you believe it!? I am also a twin! My twin’s name is Joseph “Cruz.” He’s so big and strong. When we were in my mom’s belly, we got diagnosed with Twin to Twin Transfusion Syndrome. The doctors told my mom that we needed to come out early. We were born 6 weeks early by C-section. I only weighed 2 lbs, and my twin Cruz was 5.11 lbs. This was due to our diagnosis of Twin to Twin Transfusion Syndrome. Early on, all the doctors realized I had a lot more problems than my twin brother. I was in the NICU for 3.5 months. The NICU discovered that I wasn’t able to get any nutrients by mouth or nose, so they performed a G-tube procedure, thinking that would cure all my problems. Unfortunately, that was just the beginning!
For the first 17 months of my life, I was very, very sick. I was aspirating all of my feed from my G-tube, which went directly into my lungs. This caused me to be intubated 4 times, causing serious and permanent lung damage. The resident at the children’s hospital, Dr. Beach, was the one to finally figure it out! Unfortunately, with all the lung damage, the only option was to do a Laryngotracheal Separation (LTS). It is a medical procedure that separates the voice box and windpipe to prevent further aspiration, meaning I wouldn’t be able to say “Mom” ever again. I made sure my mom got to hear me before the surgery!
After the procedure, I had to stay in the ICU for 31 days. During that stay, they finally found out I had C.H.A.R.G.E. syndrome. Looks like I am missing gene #7. Isn’t that supposed to be a lucky number? Well, I guess I’m really lucky! It occurs in 1 in 12,000 births worldwide. It is very complex. One of the main attributes of C.H.A.R.G.E. syndrome is that we are all FIGHTERS. I was doing pretty great considering all my issues for the first 11 years of my life, living at home with my family and with very minimal hospital stays. Everything changed when a mistake at the hospital happened. It started as a tiny snowball rolling down Mt. Everest, and now we are at the bottom. These last 8 years have been very painful for me. I am getting very, very tired, and I don’t know how much longer my body can take the pain. I have had 4 serious heart attacks in the last 2 weeks. My doctor came to my house and administered hospice medication on Sunday, 5/18. My doctor and my family gathered around to make sure I felt all the love and comfort at the end. I am still kicking, but I’m in really bad shape.
My mom has been taking care of me my whole life. She has never left my side; it’s been her full-time job for 19 years. My mom has been a widow for 17 years. When I do pass, which could be any second, minute, or day at this point, I don’t want my family to struggle to pay for funeral arrangements. It has fallen upon my older sisters. If you feel like helping, it would be so much appreciated. Anything helps, and there will be a way to donate directly to the funeral home after I pass.
(Update with info after passing)
I don’t want any pity. I am a strong warrior, and I have given so much love and joy to so many people. I wish I could’ve met you all. Meeting me would’ve been awesome. I would have held your hand and shared my sunshine! We could’ve listened to my favorite music together; it always made me smile.
Any donations are really appreciated.
All my love & sunshine,
Chase & Family ❤️