Russell’s Family

We are the Fountain family, Joseph, Stephanie, Annabelle, and Russell. We welcomed our first baby into the world (Annabelle) in 2009 and shortly after, we learned we were expecting again. Our babies were going to be 10 ½ months apart, but Russell had other plans and decided to join the family 15 weeks early making them 7 months apart to the day. I went into spontaneous labor and Russell was born at 25 weeks weighing 1 lb. 14.9 oz and was 12.5 inches long. Within an hour after birth, Russell was transferred to a children’s hospital in Tennessee by the “Angel Team”. Due to Russell’s severe prematurity and traumatic birth, he needed a children’s hospital with a higher level of care. Russell spent the first 108 days of his life in the NICU while we were blessed to stayed across the street from him at a Ronald McDonald House. Russell had severely underdeveloped lungs, a hole in his heart, an extra vein in his heart, and a Grade 3 Intraventricular Brain Hemorrhage at birth that caused roughly a third of his brain to be damaged. He was given less than a 10% chance of survival. We were told if he did survive, he would never “walk, talk, or pick up a cheerio”. His left lung collapsed twice requiring a chest tube to be placed twice. Several days later he had surgery to repair the extra vein in his heart. A few weeks after heart surgery Russell developed Necrotizing Enterocolitis (an infection in the intestines). The infection caused his intestines to perforate. Once again, we were told that Russell would likely not survive the night. Our boy fought hard and went into emergency surgery to remove a portion of his intestines and place an ileostomy bag. He got stronger each day until they were able to reverse the ileostomy bag and repair his intestines. After 108 days in the NICU we finally brought our strong micro preemie home on October 8, 2010, to spend our first night together as a family of four. Having a preemie was a scary new world for us. Apnea monitors, therapies, medical equipment, and doctor appointments became our new normal. Russell had his first seizure at 13 months old and after many doctors’ visits and tests, Russell was diagnosed with Partial Complex Epilepsy caused from his brain bleed at birth. Russell was also diagnosed with Cerebral Palsy, Global Developmental Delay, a rare genetic disorder (SCADD), Muscle Fiber Atrophy, and Chronic 

Lung Disease. His genetic disorder required him to have a feeding tube for many years. His chronic lung disease requires him to have an at home oxygen system as he requires supplement oxygen during flare ups. Russell also has weak eye muscles which has resulted in several eye surgeries and will require more in the future. Through all of Russell’s surgeries, sicknesses, and struggles he always remains the happiest boy. He lights up a room with his humor and laughter. He shows us every day what it really means to be strong and fierce. He doesn’t know how to give up or quit. It’s just not who he is. Then there is our sweet Annabelle Grace. She is the most supportive and protective big sister. Having a special needs brother has made her tender hearted and so understanding of others. And brave, goodness is that girl brave. We know that God blessed us with our children exactly the way He made them to be. Being a parent of a special needs child is no easy task by it is rewarding. Every step forward and every day we spend together as a family is something we will celebrate and cherish! Russell proved the doctors wrong, and he is a walking, talking, cheerio eating miracle!! 

The gift we are asking for is the ability to take the kids somewhere to see snow. Because of Russell’s Chronic Lung Disease,we have been in quarantine at home since the pandemic started. We had to take both children out of school and now we homeschool both.  We know based on previous illnesses that Russell would not handle Covid well, so we follow all of his medical team’s guidelines and stay at home as much as possible to minimize risk.  This has been very hard on the kids especially with the age they are. They want to be social and see friends at school, so it has been a big sacrifice for them. They have been so understanding through all of this so we would love to take them somewhere to reward them for being so good. We asked the kids what something is they have always wanted to do they both said, “throw snowballs and make as many snowmen as they could”.