That smile. That spunk. To look at little Lola today, you’d never know how much she’s overcome in her short life.
Lola’s parents, Amanda and Derek, learned that she had a had a congenital heart defect, known as transposition of the great arteries, when Amanda was 24 weeks pregnant. Lola would need open heart surgery shortly after birth.
“We traveled to Seattle, where Amanda delivered Lola, and her surgery was performed when she was 4 days old,” recalls Derek. “Due to post-op complications (Lola suffered from a brain hemorrhage, seizures and went into cardiac arrest), Lola remained hospitalized for over a month. During Lola’s hospital stay, we also learned that Lola has a rare genetic condition called Rubinstein-Taybi Syndrome (RSTS) which comes with various associated physical and intellectual disabilities.”
Like many parents who receive an unexpected diagnosis, Derek and Amanda had to not only process all that Lola was going through, but also learn very quickly how to support their newborn baby girl. Upon returning to Spokane, the family connected with Joya where Lola started physical therapy and feeding/speech therapy at just two months of age. Eventually, she started receiving occupational therapy and special education services as well.
“After coming home, Lola remained on a feeding tube for several months,” said Derek. “From the moment we brought Lola home we were grateful to have the resources and support that Joya could provide to help us navigate the many challenges ahead. Our family could not imagine life without Joya. Lola progresses every day and has learned to eat, crawl, stand, sign and talk all with the support of Joya’s generous teachers and therapists. Joya’s support has been pivotal in helping Lola learn and grow and she truly knows no limits.”
Lola looks forward to her weekly therapy sessions and loves singing with her speech therapist Nikie and playing new games with her teacher Rachel. Her parents feel they have learned right alongside Lola over the past 17 months, helping them all thrive.
“Lola is a strong, resilient and brave girl who loves a challenge,” said Amanda. “We look forward to watching her grow and are grateful that we have a little more time we get to spend at Joya.”