DAMIAN ASUNCION

#TEAMSUPERDAMIAN

Damian is a sweet 8-year-old boy from Gatewood Ln
and we’re on a mission to raise $10,000 to send
Damian and his family on a dream trip to
Aulani, a Disney Resort in Hawaii
where they can make wonderful memories together,
OUTSIDE of the hospital!

Damian is a sweet 8-year-old who has been fighting for his life since before he was born.

At my very first ultrasound, doctors delivered the news that his brain was abnormal. They couldn't tell me why or what had happened. Before each scan, I would hope and pray that somehow he would be cured and that his brain would miraculously look "normal". But yet at every scan, his brain abnormalities became more and more visible. It was agonizing not knowing what our sweet boy's diagnosis was, or how we could help him. It wasn't until I was 30 weeks pregnant that we got answers. The doctors ordered an MRI of his brain while he was still in-utero. The MRI showed that he had suffered from catastrophic strokes that affected every part of his brain. The news was gut-wrenching and I didn't even know that strokes before birth were even possible. I remember the moment my doctor called with the results, and how I cried for hours afterward. No one could tell us what that meant for Damian and his future. All they would tell us is that he would have profound challenges. I didn't know if it was my fault, or if it was something I did. I couldn't help but blame myself.

After Damian was born, we ran endless tests to try to determine the cause of his strokes. After a full blood workup, his hematologist found that he has a blood clotting disorder and they believe that blood clots caused the strokes. We were told that cases like his usually end up as early miscarriages, so it was a miracle that Damian survived.

When Damian was very young, it was clear that his life would be difficult. At 5 months old, he got diagnosed with epilepsy. As time went on, his seizures got worse and worse. When he was about 2 years old, he was seizing all day every day. No medication would touch his seizures and we didn't have many options. In order to save his life, he underwent a 9-hour brain surgery, called a functional Hemispherectomy, to disconnect the entire left hemisphere of his brain. This was considered palliative, not curative since his entire brain is damaged and capable of seizing. We went after the left hemisphere because it was seizing more frequently than the right one. Since surgery, the amount of seizures he experiences has decreased although he will never be seizure free. He still has seizures multiple times a week. I will never get used to watching him stop breathing during a seizure and not being able to do absolutely anything about it.

Damian also suffers from multiple other conditions due to his strokes. He has microcephaly, chronic lung disease, and is visually impaired. Damian has severe cerebral palsy that prevents him from ever being able to walk, stand or sit. He will never get to play catch, ride a bike, or play at a playground. His spasticity (tight muscle tone) is so severe that it pulled his hip out of the socket and he had to have it surgically repaired, which was extremely painful for him. Damian also got diagnosed with scoliosis and will be needing spine surgery in the future. He has spent a large portion of his life in the hospital and has had countless surgeries.

Damian has three brothers- two older and one younger. His older brothers have been through everything with him and have missed out on so much. They have been there to hold his hand when he's not feeling good, and are the best big brothers to Damian. They unfortunately were forced to grow up faster than other kids.

Although Damian can't speak, he can express himself clearly. He is the happiest boy and always has a huge smile on his face, no matter what he goes through. He gives me strength.

A trip to Hawaii would be life-changing for our family. It is something that seemed impossible, and we are so beyond thankful for this opportunity to actually make it a reality. Damian is a HUGE Disney fan, and his favorite movie is Moana (he absolutely loves the soundtrack). Disney's Aulani would be magical for him, and I would love for him to experience the warm ocean waters of Hawaii at least once in his life.

Making memories with Damian is our top priority. The devastating truth is we don't know how long we have been with him and we cherish every moment we get to spend with our precious boy. He is so deeply loved.

- Andrea Fierro & Michael Asuncion