Support for our sweet little boy "Dante"

Dear family members, relatives, friends and every kind person out there in the world; those that I have had the pleasure to meet and those that so far I have not had the chance to meet:

My name is Dante and I was born full term on 12-10 -19 into a loving and caring family. I am almost 3 months old spending my days and nights at NICU.  I would like to share the story of my birth and my long journey.  

When my mommy was pregnant with me, she had no complications and all the test results and ultrasounds came as negative and normal. She even had no complications during her scheduled C-section. However, right after my birth, when I was transferred to recovery/routine exam room, the nurse noticed I had a very rare birth defect, which shocked my parents and immediate family members.  My condition was so critical that they transferred me to Children’s Hospital in couple of hours. It was very heart breaking that I had to be separated and sent to another hospital, away from my mommy who carried me for 9 months and get ready for more exams and my first major surgery. It is also very hurtful that I never got the chance to meet my older brother Derek who was always feeling me by touching and kissing my mommy’s belly all the time and getting me excited and responding back with a kick. He is still waiting to meet me anxiously but since he is not 3 years old yet, hospital rules don’t allow him to visit me. My caring and strong daddy was with me since the first second of my life to comfort me while my mommy was in recovery.  

The first surgery was done successfully on 3rd day of my life to prepare me for the repair of the birth defect. However, I still need to go through two more major and risky surgeries before my first birthday if everything goes okay. After my recovery, doctors noticed other issues in me: I’m not able to eat by mouth, I’m keeping my muscles stiff, I’m not showing signs of hunger, I have unusual tremors, my left kidney had and still has more liquid in it. On top of these, I hardly cry and I sleep a lot, which is very unusual. All of these were concerning. Different specialists started examining me and kept on ordering lots of tests and procedures on me to see if they can find any answers. Blood draws, urine samples, 3 different genetic tests, IV’s one after another, brain MRI, spinal fluid test, 12 times of being on EEG, many ultrasounds, X-rays and etc. to just name a few. It is a very stressful and scary for a new born to go through all these testing instead of being swaddled and held closely by the parents to enjoy each other’s company and bond together in a nice home environment.   

While my parents were waiting for my test results to come back, doctors transferred me from NICU to general pediatric floor since my vitals were stable thinking by some physical therapies over time all of my conditions above will be resolved.

However, the day after my very 1st Christmas, I started holding my breath for the first time. My whole body was turning red and my lips to purple. I was in pain to the point that my whole body was shaking very hard at the same time non-stop.  I wasn’t even crying nor able to do so while I was in that level of pain. I was transferred back to NICU and they started to do more blood draws and testing, but no one was able to find out what was wrong with me.  After a few days, I started getting worst and worst. I was on oxygen, and I was doing abnormal body movements. My eyes, my head, and my arms and legs were twitching. It took my parents 3 days to convince the doctors that I’m having seizures. My parents were right and I was having seizures for the first time. Since then I’ve been having multiple types of seizures every week and I’ve been on three types of anti-epileptic medications, and I’m still having seizures every week even on high dosage of medication. My respiratory system always collapses while having seizures and it is life threatening situation since I always have to be put on oxygen or be intubated.  All these medications have long-term side effects and they put me to sleep for very long hours so I can’t wake up and interact with my family. I still feel my mommy’s tears when she was hiding her face from me crying when I was getting seizures and going apneic.  

My parents have been fighting for me since day one; they were on top of everything and doing everything to give me positive energy. Every time that was a meeting with doctors to find out my status, my parents were always told, “they don’t have answers since all the tests are coming back negative.”  Doctors’ only mentioned that my condition is so rare and there is no other baby with the same conditions.  

We all knew that something very serious is happening to me.  Finally, my parents decided to transfer me to UCLA hospital for second opinion. It has been exactly One month since I have been in UCLA hospital and still struggling with my rare condition and dealing with multiple seizures.  I’ve been on and off of IV fluid and oxygen. There has not been much of improvement yet and they are still keep testing and doing more studies and researches on me. Doctors believe there is no healthy future for me. They believe I won’t be able to eat, speak, crawl, seat and walk. They think I may have a short life expectancy. They are not even sure if I have perfect vision and hearing. Recently my parents have been told that they won’t be able to do the second surgery to finish repairing my birth defect any time soon.

I’m a sweet little boy inside out, strong and hopeful. I don’t want to give up. I’m fighting as much as I can, and I can feel how strong my family is by caring for me and loving me. There is an important study being done on my genes at this moment in one of the San Diego research labs. We are all hoping that they can find the cause and cure for my condition. My 2-year old brother who chose my name for me is waiting at home to see me. He keeps asking my parents about me and calling my name. I really want to go home and play with my brother. I already know how much he loves me and how much I love him. I want to have a normal healthy life and live with my parents.

Please help me by supporting this fundraiser for some of my medical expenses and future studies as it may be necessary. I have a long road to go. I need to use the fund in order to be able to see other well-known specialties, doctors and researchers outside of this hospital who don’t accept Med-Cal. I need more thoughts, more opinions and more researches on my case since it is so unique. I also need to use the funds for some herbal medications prescribed by doctors that insurance doesn’t cover in order to control my seizures without harming me unlike pharmaceutical medications that I am being given now with a lot of side effects. I hope that somebody can find my underlying neurological cause and a solution for treating my condition. I would like to grow up and live a normal life next to my family.

Thank you for spending time to read my story. I need lots of prayers and supports!

Love you all,

Dante