Eli Cullison Mayo Clinic Specialist Fundraiser

Elias was born a beautiful 7 lb 5 oz boy. Soon after birth, he was taken to the NICU with fluid in his lungs. He was tube fed for 48 hours and was released. Once home, we noticed that Elias was breathing differently. One morning, after a long night of worrying, Elias stopped breathing. We administered chest compressions and he was rushed to the hospital only to be sent home a week later with a diagnosis of reflux and given an apnea monitor. Elias stopped breathing again that night and was rushed to Riley. Once there, they did a swallow study and found that he was aspirating thick and thin liquids. He was then placed on an NG tube until he was 6 months old. Then he received a g-tube. Elias was almost two when he became failure to thrive even though he was tube fed. He was delayed in everything and not able to gain weight. He was also vomiting a lot. Elias was found to have a laryngeal cleft (hole in his airway). In January 2019, Elias had airway surgery and a GJ tube placed. His airway swelled during surgery and he was put on a ventilator. He came off a few days later with double pneumonia. Elias dealt with pneumonia previously and continues to periodically. Elias was unable to eat without throwing up. The next few years Elias was constantly sick. We attempted different medications, different formulas, different therapies, different doctors. Elias was tested for genetic disorders. It was found that he has 9p24.3 duplication which is now an official diagnosis. It's rare, and they do not know much about it. Elias also deals with spells where we will find him non responsive and blue. This year, Elias has had a roller coaster of sicknesses. He is now barely able to handle small tastes of foods and has a diet of formula through his tube, whipped cream, and suckers. He absolutely loves food but can't eat it. We attempted to do feeding therapy, wondering if he went through an intensive therapy where they could teach his stomach to handle the foods... Then maybe we could do a little food at least. This sent his body into chaos. He started having episodes of vomiting in the middle of the night in his sleep. To this day, we don't have a way to manage his symptoms because we don't know when these episodes will happen. We haven't gotten any answers as to why either. Mayo Clinic is our big hope. We are praying that the Lord will move mountains and provide answers.

But you should really know this about Elias....

He is a little artist and math wiz. He is a boy who sees life through such a colorful lens. He finds joy in just about anything and loves everyone with his whole heart. He has the best laugh and he lost all of his front four teeth at once which makes him even cuter than he was already. He's bubbly and will talk your ear off about his plans for just about anything. He loves God and has seen His presence during all of his sickness. He talks about Him like a close friend.

The most important thing about Elias is that he will ALWAYS share his whipped cream with you. Even though it's the only food source he can eat.... He will share it with a smile. He is an absolute joy and we are praying for answers to help him. Thank you for your consideration and donations to help our baby boy.