Max was born on August 21st, 2016 with VACTErl Association. Minutes after he was born he was taken from me and put into the nursery to await the pediatrician as he stopped breathing several times right after birth. After several hours of testing, we were informed of the extent of Max’s problems. His stomach was not attached to his esophagus, instead it had attached itself to his trachea, he had no anus, and his spinal cord was attached to his spinal column instead of floating freely the way it should. They also found a small brain bleed, a heart issue, and a liver issue. The next morning Max had the first of many (more than 70 today) surgeries and procedures necessary to repair his body. 

Over the last 5 years we’ve fought hard to help him gain weight and grow. We’ve made a lot of changes to make it easy for him to eat solids, to swallow and breathe safely with as little pain and as little hindrance as possible and Max has started thriving! Through out all of his procedures and surgeries and losing everything he knew to a house fire, Max has stayed happy and kind. He loves everyone and is always doing his best to make the people around him smile and feel loved including his 4 siblings.

Recently Max has started having a lot of choking, pain and food getting stuck as he’s trying to swallow. We had an endoscopy done to determine if his repair site had closed down again and discovered that there was no significant narrowing at his anastomosis (repair site). Unfortunately, we were given a new diagnosis. Aberrant right subclavian artery. ARSA is a very rare condition that affects somewhere between 0.5 and 2% of the population. Relocation surgery, rare as it is, carries a high amount of risk and pediatric relocation is even more rare as the general age groups that experience symptoms are over 40.

The artery that provides blood to Max’s right arm grew in the wrong place, it branches directly off of his aorta on the left side and in it’s path to the right arm has created a vascular ring around Max’s trachea and esophagus. In most cases ARSA is not symptomatic and does not need any treatment… Unfortunately for us, Max’s is causing symptoms. It is currently compressing his esophagus which is causing the choking, and will eventually start to significantly compress his trachea causing breathing issues which indicates the need for surgery to relocate the artery.

Max will never be cured. He will face swallowing and breathing issues for the rest of his life amongst other medical issues. This surgery will allow him to maintain a decent quality of life where he does not have to fear that every bite of food might take him to the hospital, or that every night of sleep might be his last due to apnea caused by the ARSA.

The funds donated here will go towards our portion of the medical bills – including our out-of-network out-of-pocket costs for both 2021 and 2022, flights, hotel stays and expenses, as well as lost wages during our journey to get this ARSA relocation completed. Our family will be forever grateful to anyone who can help us achieve this goal so we can get the treatment needed to help our little boy swallow and breathe safely again.