Stories

Riley Lesh’s Story:

At 25 weeks gestation, I developed preeclampsia and a rare condition called HELLP syndrome. My platelets dropped to a fatal level and I went into system failure. An emergency c-section was ordered and Riley was delivered 3 and a half months premature. She weighed 1lb. 10oz and was 13” long. Although her chances of survival were slightly better than 60/40, the chance of her making it through without a disability was about 10%.

At 2 weeks old, she had a surgery to close a ductus that was causing heart and lung issues. She spent another 12 weeks in the NICU after that, overcoming every issue that was thrown her way. She came home a week before her due date, on both oxygen and a nasal-gastric feeding tube. Within a few weeks, we were able to get rid of both of those. She received therapy and made frequent trips to Riley until she started walking just a week past her first birthday (8.5 months adjusted and weighing 13 lbs). She has continued to defy the odds and today is a healthy 9 year old.

Ryan Lopez’s Story:

Eight-year-old Ryan Lopez is well known in Monticello, Ind., in part for his thick hair that once flowed well past his shoulders. In the spring of 2010, Ryan decided to grow his hair for Locks of Love, a nonprofit organization that provides hairpieces to children with medical hair loss. “I lost my hair, and I wanted to make a wig for other people who lost their hair,” he explains.

Ryan is now a fourth-grader at Oaklawn Elementary School. He was 5 and in kindergarten in early April 2008 when he experienced flu-like symptoms that persisted and worsened. Staff at a local clinic told his mother to take him immediately to Home Hospital in Lafayette. Doctors in the emergency room there called an ambulance to take him to Riley Hospital for Children at IU Health. Ryan’s parents Rochaun and Tony had recently moved to the area from California and didn’t even know what “Riley” was.

Ryan arrived at Riley Hospital limp and frail. His diagnosis: acute lymphoblastic leukemia. He would spend the next two months fighting one life-threatening complication after another. His mother stayed with him, and his father and older brother TJ came on weekends. Ryan’s type of leukemia required different levels of chemotherapy over the next three years and two months. Last summer the family went to Mexico to celebrate two exciting achievements: Ryan completing his treatment, and his brother graduating from high school. At the ocean, Ryan learned to boogie board. “I couldn’t get him out,” Rochaun laughs. “He’s a little fish.”

Ryan’s illness prompted his family to get involved in Twin Lakes High School’s dance marathons to raise money for Riley Hospital. Ryan appears in a promotional video for Purdue University’s dance marathon as well. The family feels strongly about giving back to the hospital and the town that supported such new residents. The Lopez family is especially grateful to Susan Willbanks, TJ’s guidance counselor-“our angel”-who took the family under her wing through many acts of kindness.

“Ryan has shown real courage and character,” Willbanks says. “Riley Hospital saved Ryan’s life, and I am convinced that he will use the life he has been given to do great things in the world.”

Braden Tamosaitis’ Story:

In October of 2002, my wife gave birth to our second child, Nathaniel. Our first child, Sierra, was 4 at the time. When Nathan was born, he was born with a condition called Spina Bifida. We knew of his condition before his birth, and he was not expected to survive at all after he was born, due to the severity of, and his form of Spina Bifida. He did survive against long odds, and faced several surgeries early in his life. He actually had three in the first seven days after he was born. Then, after six weeks of struggle, he passed away in December of 2002.

Three years later, we were blessed with our third child, Braden. When we first found out my wife was pregnant, we went through a multitude of tests due to our history. We were given the crushing news at that time that this child would too be born with Spina Bifida. We were sent to take part in a trial about Spina Bifida to see if in utero surgery could help with the outcome. We were told by them at that time there was nothing they could do for us or Braden. They told us that most likely he would have the same outcome as our first son. Where his level of Spina Bifida was indicated, the best we could hope for at that time was no mobility, feeling, or control from his belly button down. Also, with some of the associated conditions with Spina Bifida, Hydrocephalus and an Arnold Chiari II Malformation, we were told that there would be little or no cognitive ability from our child. Then they sent us home. Shortly after that we began meeting with the doctors that would become Braden’s doctors at Riley. The biggest difference was they gave us hope. They had no idea what the outcome would be, but they let us know they would do everything they could to help us and our son.

Well, when he was born in March of 2005, he came out kicking and screaming, a VERY ticked off little boy! It was one of the most wonderful moments in my life. Usually, with Spina Bifida kids, they immediately face two surgeries in the first few days after birth. Braden came out strong enough, that he had his first only hours after he was born, which was a surgery to close the area of his Spina Bifida. The second surgery was the next day, which was to insert a shunt to relieve pressure in his head from the Hydrocephalus. He came through both of those surgeries with flying colors! He was actually sent home only 11 days after he was born, which is amazing considering his prognosis!

Today, more than six years later, Braden is doing very well. He is bright, energetic, humorous, good natured kid, and a very typical little boy. As for his physical abilities, well, doctors don’t always get it right. This time, they were happy to have underestimated Braden’s abilities. Where Braden’s Spina Bifida occurred, he should not have the ability to feel, move, or control anything below his belly button. Well, he can. He crawls, can scoot on his bottom, can use a walker some, and can pull to stand at furniture. He does have a wheelchair for longer distances, and to give him independence, which it most certainly has. Over the last several years, Braden has had nearly a dozen surgeries at Riley. We are also at Riley weekly or more often for therapy as well as various doctors’ appointments. The staff has become like a second family, and Braden has to check in with all of them every time we are there. There is nowhere else we would rather go and we are so thankful that Riley is so close and available for us.