Elena and her husband, Milan, were living in Russia, where they met, when they had their first daughter, Josephine. At 4 months old, the Villareals noticed something was wrong with Josephine, so they went to the pediatrician. The doctor told Elena and Milan their daughter had Spinal Muscular Atrophy Type 1 (SMA). In 2011, the Villareals decided to move to the United States, where there was more research being done for Spinal Muscular Atrophy. There is no cure for SMA and the average life expectancy is 1-2 years old. Josephine passed away at 15 months in May 2012.
By Jennifer Tackett
Christmas 2013 was supposed to be magical. It was our first as a married couple and we were also expecting our first child. I hadn’t felt great that entire day so we checked my blood pressure and it was really high. We went to our local ER just to be safe. After a few tests they told us I had severe Pre-Eclampsia and HELLP Syndrome and the only cure was to deliver the baby! Our hearts sank and we were terrified because I was only 25 weeks pregnant. The next day on Christmas morning I was transported from our hometown of Pikeville, Kentucky to the University of Kentucky in Lexington which was three hours away because they had a higher level NICU for the baby. I was given so many medicines and steroid shots to try to help keep her in. Four days after being there, my internal organs started to shut down and my brain started to swell so they rushed in and did an emergency c-section. At exactly 26 weeks pregnant on December 29th we delivered a beautiful but very tiny 1 pound 6 ounce baby girl whom we named Autymn Layne. Her lungs were severely premature and she was placed on the ventilator. She was given a 50% chance of surviving at that time. During this trying time we were three hours from our home and didn’t know where we would stay to be close to our baby girl. The local Ronald McDonald House had just closed for renovation. We knew we would be there a few months and we could not afford a hotel for that long. We pulled our RV to a spot we found 45 minutes from the hospital. It was a long, cold winter traveling back and forth daily, but we survived. After five months we heard the Ronald McDonald House was opening. I will never forget the feeling I had when we checked in. I couldn’t help but cry during the tour thinking how blessed we were to be able to have such a nice and safe place to rest only minutes away from our baby!
After many months and failed attempts to get Autymn off the ventilator, we realized that her lungs were too sick to be able to allow her to breathe on her own. She was diagnosed with BPD (Bronchopulmonary Dysplasia) which is a chronic lung disease. In May 2014 she had to have a trach placed. This made her worse than before. We were told that she may not make it another 30 days. We were not willing to accept that for an answer. After some research, we learned that Nationwide Children’s Hospital had an actual BPD unit for babies just like Autymn. We knew we had to get her there ASAP. This hospital was six hours from our home, so naturally we thought what are we going to do? Where are we going to stay? We were told there was also a Ronald McDonald House in Columbus where we could stay. This lifted a great burden from our shoulders.
In July 2014, my daughter and I were airlifted to Nationwide Children’s as my husband, Erick, made the trip by car with our belongings. While I stayed with the baby and was getting her settled in, Erick walked over and got us checked in at the Columbus RMH. He came back and told me how nice it was and how nice everyone was to him. What a blessing it was to have such a nice, safe place to sleep and have a warm meal within walking distance from the hospital! The most important thing the Ronald McDonald House gave us was TIME with our daughter. A baby’s development improves so much better with the presence of both parents. Without the Ronald McDonald House we would not have been able to be with her daily and be the parents we wanted to be to her and help her thrive. It also allowed Autymn’s grandparents to be close to her and give her that special attention only a grandparent can! We would have only been able to afford to drive and see her a few times a month if not for them. For this we are forever grateful!
Nationwide Children’s truly saved Autymn’s life and five months after arriving in Columbus on NICU day 351 Autymn was released to go HOME for the first time! We can never thank everyone at the hospital and at the Ronald McDonald House enough for everything they have done for our family during this tough journey! The kindness shown to us from the Ronald McDonald House staff and volunteers has truly changed us as people. It makes us want to give, help more, and be better people than we were before. We feel we are better parents and all around better human beings than we were before we started on our journey. Nobody can begin to imagine what a great organization RMHC truly is until you have a sick child, need a safe, warm place to stay and a place to go to after a long hard day at the hospital to escape the monitors and machines. It was also a place where we made lifelong friends with other parents going through similar situations. It means so much to have people to talk to that empathize with how you feel and what you are going through.
Autymn is now 19 months old and has been home for 8 months. She is the happiest baby you will ever meet and always has a smile on her face. She is meeting all of her milestones and doing great on a minimal amount of oxygen so we expect to be able to get her trach out this spring! We travel to Columbus once a month for a few nights for follow-up visits. It is so nice to know we can continue to stay at the Ronald McDonald House with Autymn. She loves all the different rooms she can play in during our stays! Every month I always say “we’re home” as we pull in the parking lot. It truly does feel like home away from home and we look forward to visiting and seeing our family and friends each month! Thanks again for ALL that you continue to do for not only our family but for ALL families with sick children!