“The day Ryan took his first few steps (January 8, 2019) we cried the happiest, ugliest tears and thank goodness for technology because we could film it and practically sent it to everyone in our contacts list,” said Allison, Ryan’s mom. “We were so proud to send it to Jamee knowing how hard Ryan had worked with her to get to that point.”
Jamee Funk is Ryan’s physical therapist and also his primary therapist. Ryan sees multiple therapists including Nicole Nickel, speech language pathologist, and Leslie English, early childhood teacher, for joint visits every month as a part of the multidisciplinary team approach Rainbows offers all of its families.
Ryan was diagnosed with seizures at 4 months of age and a B12 deficiency. At 6 months, Ryan developed Infantile Spasms. Since December of 2018 he has been one- year seizure free and is still on seizure medications. Ryan’s seizures happened when the family was living briefly in Columbus, Ohio. They ended up at Nationwide Children’s hospital and before they were discharged, the hospital helped them set up all of the services and/ or doctors Ryan would need to follow up with in Wichita.
“We were familiar with the name Rainbows,” said Allison, “but it would be later that we would find out that we could not have made it through this journey with Ryan without Rainbows.”
The family has worked with Jamee the longest and very much think of her and talk about her like she is a member of their family. “When Ryan first had his Infantile Spasms, we had no idea what they were,” said Allison. “It was Jamee who identified them and recommended calling our Primary Care Physician. That then led us to KC Mercy where Ryan was properly treated for Infantile Spasms. Jamee would check in with us; check in on how Ryan was and give us different suggestions of stretches and exercises we could be doing with Ryan during our stay at Children’s Mercy. She was the support we needed and all she was doing was reaching out and being a good person.”
“Rainbows has very much become a huge part of our lives and anytime Ryan does something new we’re trying to get it on camera so that we can share our good news with Rainbows staff because we know they’ll share in our joy” said Allison. “They have been Ryan’s strongest advocates and his loudest cheerleaders.”
Ryan has made tremendous changes- and still does to this day. “I’ll be honest, for a little bit it felt like Ryan was just at a standstill and we would just never get past all these hurdles,” said Allison. “It felt like we were working with him so hard, and he had all of these lab and doctors’ appointments and we just couldn’t see the light at the end of the tunnel for the next milestone. It was the positivity from Ryan’s therapists that got us through and kept pushing us to push and encourage him.”
“Ryan’s progress has been huge because his family embraced our coaching model from our first visit,” said Jamee. “His parents use strategies we talk about and practice during visits during play and routines throughout their day. It’s been exciting see Ryan’s growth and the smiles on his parents’ faces every time he does something new. The family is awesome and I can’t wait to see what Ryan does next.”
“I truly wish every family had the opportunity to work with Rainbows’ staff members,” said Allison. “Every staff member we have met so far- even students- have been tremendous and they each go above and beyond to make sure you are getting every resource possible for your child.”
“If your child has a developmental delay, do not be embarrassed about it,” said Allison. “Get them help- they deserve it. Get them the help they deserve from Rainbows. These therapists and staff members are what any parent would dream of when working with your child. They give you the resources and tools to work with your child when they’re not there but are 100% available via phone or email if you need encouragement or have questions. Ryan’s therapy team has always made us feel like he’s number one, encouraging and cheering on Ryan and his milestones and accomplishments.”
“Ryan is Ryan and he’s going to do everything and anything on his time- and he has shown us that even at a young age,” said Allison. “We do not want Ryan’s delays, health issues, or whatever is to become of Ryan as he keeps developing and growing to define him. We want Ryan to always be given an opportunity by teachers, by the community, by friends and family. I never want him to think he’s different because of the way the world might treat him, someone might stare at him in the grocery store, or make a comment about why he’s not talking or running because of any current or further developmental delay he currently has or potentially will in the future. As long as he is kind and hardworking, that is all you should care about when you see or meet Ryan.”
Rainbows programs have been consistent throughout the pandemic and 643 new children have come into Rainbows services in the last 8 months. However, we need your help to navigate the challenges ahead. I hope you will consider giving a gift to Rainbows this fall. You can also donate through the Rainbows’ Donate page. Together, we can help families like the Marshalls reach their full potential – regardless of the challenging time that surrounds us.
