Hayden is a sweet five-year-old who is smart and very caring to others. She is currently in kindergarten and loves to play t-ball and spend time with her family, especially at the beach or pool. According to her mom, Hanna, “Hayden has a few things that make her extra special – one is Beckwith-Wiedemann Syndrome (BWS).”
BWS is a growth disorder that makes the body or parts of the body grow faster. “Hayden was born four weeks early with a large tongue and stayed in the NICU for nine days,” said Hanna. “No one knew she had BWS until she was five months old and an official diagnosis could be made. She had a tongue reduction at two-years-old to help with eating, breathing and talking, and is currently doing great in speech therapy.”
Because BWS increases the risk of cancer, Hayden has cancer screenings done every three months. Hayden was more recently diagnosed with Dysgenesis of the Corpus Callosum (DCC), which means the corpus callosum part of her brain is shaped differently. “We are still learning about DCC but the only thing we see as a result of DCC is Hayden’s OCD and anxiety,” said Hanna. “Hayden also has anhydrosis, which means she can't sweat and has a very hard time cooling down. The summer time is the worst for her, but she is tough and doesn't let her special things slow her down.”
Hayden received a stroller from Numotion to help with her mobility. “She loves her stroller. Some days she just likes to sit in it and watch TV,” said Hanna. Hayden’s family is excited about the stroller because it will make it easier to go places. “We tested it out at the mall and the lake and it is perfect,” said Hanna. “Another thing that we noticed is that the stroller helps with Hayden’s eyes. She has megalcornea, or large corneas, and her eyes absorb too much light if she is outside without sunglasses on. With the stroller, she has the canopy that we can pull over which has made it a lot easier for all of us!”
Hanna said Hayden’s ATP, Chuck, was great. “He listened to our story and why we needed help,” said Hanna. “He was great with Hayden and my youngest that was at the appointment. He was very helpful and answered every question I had. When the stroller came in, Chuck came all the way to Hayden's elementary school to deliver it. He was very patient with us and made sure Hayden was comfortable in the stroller and made sure we knew everything we needed to know about it.”