Alex is a senior this year at Andover Central High School. He’s involved in soccer, bowling and mountain bike riding. His goal after high school is to go on to college and is interested in Physical Therapy. He loves spending time with his family and friends but is looking forward to going off to school. He’s a determined kid that has battled many obstacles and come a long way.
Alex was born with Russell-Silver Syndrome-Russell-Silver syndrome, a rare genetic disorder characterized by delayed growth in-utero (IUGR) that spares head growth (meaning the newborn has a head size that is large for his body) and ongoing postnatal growth failure. This disorder includes feeding difficulties and/or low BMI, dysmorphic features including a protruding forehead, and frequently body asymmetry (hemihypotrophy). The true incidence is unknown but is estimated at 1 per every 35,000 – 100,000 live births.
Alex’s parents, Brian and Heather, are from Wichita and were familiar with Rainbows and reached out after Alex had his feeding tube placed at 14 months old and his daycare did not feel comfortable in managing his medical needs. “I’m so thankful that we moved him to Rainbows at a young age,” said Heather. “He progressed well after starting all the therapies. He was delayed physically in the beginning but eventually caught up to his peers. Even though he was so small compared to his peers he was able to keep up and do everything they were doing.”
Alex received physical therapy, occupational therapy, feeding therapy and speech therapy all while attending the early care and education program from 2006-2010. He continued with feeding therapy after Rainbows and eventually had his feeding tube removed when he was 10.
After more than a decade after their son Alex received services from Rainbows, Heather and Brian still remember and are grateful for the many Rainbows staff who are an essential part of their family’s story. “Alex worked with many of the Rainbows staff members and they were all wonderful with him,” said Heather. “A few that made an impact on Alex and our family were Director Holly Howell, Nurse Jeni Neighbors, Nurse Shirley, Receptionist Donna Sorrell-Wharton, Teachers Gladys Miller, Stacy Jensen, Ashley Hicks-Hardyway, Yolanda Castillo and Cheryl Davis, speech therapist/feeding therapist. Maria Magno she was always in Alex and Olivia’s room as a para. She was always so kind and nurturing with Alex and Olivia.”
“Knowing that Alex was getting the attention and help he needed made a huge impact on our family,” said Heather. “It took so much stress off our family. I believe that Alex would still be physically delayed if we did not address his delays early. The staff at Rainbows knew Alex so well and could evaluate him daily to make sure that he was progressing like he should. We couldn’t have asked for more. We are so very thankful.”
Heather and Brian’s daughter, Olivia is 12 years old and also attended Rainbows. “She was a typical kid, but we wanted her around atypical kids. She has grown to be a very understanding and loving girl to all people no matter their disability. I appreciate that Rainbows keeps typical and atypical kids together. They grow up respecting their differences.”
When the family can find time in between soccer, volleyball, track and mountain bike riding, they enjoy watching movies, being outside and traveling.
