Love + Gratitude + Perseverance = The Ryan Family

Ashley and Luke Ryan are raising four boys. Their youngest son, Evander, is so unique that he is the only reported person in the United States that has CAMRQ2. There are only three other people in Italy who have the disorder. 

“When people say I’m sorry. I say ‘Don’t be, he’s a happy kid. He’s loved by his brothers. We enjoy being together. We’re still living life every day and grateful for every day we have. It just looks different’” Ashley Ryan says.

A rare genetic disease diagnosed by DNA testing at Children’s Minnesota and Mayo Clinic, CAMRQ2 causes his brain to be structurally different. Symptoms are extreme vertigo, lack of coordination, hypermobile joints, low muscle tone and involuntary muscle movements. Autism is also present with this disorder.

Ashley and Luke know that Evander won’t be a typical human when he grows up. But with no documented history of this disorder, they have no idea what to expect as Evander grows. Will he walk on his own? Will he talk? Will he play with his older brothers? There are no answers.

On TikTok, Ashley shared a video of Evander standing at a table. She captured the first time he was able to go from standing to gently sitting down.  

“My sweet Lil’ Evander is 2.5 and has made so many gains. He continues to amaze me every day and I am so incredibly blessed to be his mom,” Ashley posted.  

In raising Evander, Ashley learned that support is everything. She found her support and care team with Dr. Ben Dexter, the family’s pediatrician, Abby Schneider, RN, pediatric nurse care manager, and therapists at Mankato Clinic Pediatric Therapy Services. She has also joined Help Me Grow, the early childhood special education program, in Mankato Area Public Schools.

A registered nurse, Ashley is Evander’s full-time nurse employed by 1^st Choice Pediatric Home Care, which is the best solution for Ashley, Evander and the Ryan family. Her oldest son has his CPR certification as a backup in case of an emergency. Her shift ends at 4 pm, but she works around the clock to care for him.

“I have the best job in the world!” Ashley says.

Therapy

Evander attends physical, speech and occupational therapy twice a week at Pediatric Therapy Services. Ashley joins him in his sessions and updates his therapists on Evander’s progress at home. In return, she finds joy, encouragement and understanding in raising a child with special needs. This is their happy place.

Therapy looks like play because that is how children learn and develop. However, it’s also hard work for Evander and can be frustrating. Ashley caresses his arm to calm him.

Physically, he doesn’t have the strength to support himself and prefers to lay on his back. He can pull himself up, but his joints are so flexible that his legs and arms give out.

“My little guy is getting stronger every day. He has become more mobile. He is crawling and spending more time upright,” Ashley says.

When Lindsay Dexter, PT, DPT, joins Ashley and Evander for physical therapy, he greets her with what sounds like “hi”, a clap and strong eye contact. Evander is mostly non-verbal, but he communicates.

During the session, Ashley sets up Evander’s feeding tube that pumps liquid nutrition from a small backpack into his stomach, allowing him to receive the nutrition he needs.  Evander’s diagnosis of eosinophilic esophagitis (EoE), which impacts his esophagus and esophageal tissue, makes oral feeding and swallowing difficult.

Physical therapy helps him to explore his environment, strengthen his muscles and improve his balance and coordination to crawl, stand and walk.  

“We have been working on creeping on hands and knees and pulling himself up to standing at a support surface, two skills he is now able to do on his own. We also work on increasing his tolerance to upright postures, cruising along surfaces, and developing balance reactions while in standing for increased safety,” Lindsay explains.

Adaptive equipment is a game changer for children with special needs. At home and in therapy, Evander is learning to walk with a gait trainer which is similar to a walker but offers extra support for his torso. 

For occupational therapy, he sees Amanda Schultz, MA, OTR/L. Amanda looks at Evander’s daily routine. With the support of an activity chair, Evander can sit and play. He is learning to pick up small pieces, push together and pull apart toys, and put shapes into a shape sorter. Amanda helped the Ryan family get an activity and bath chair to meet his needs at home.

“Evander is a sweet boy! We are currently working on arm strength, coordination and fine motor skills,” Amanda says.

Beth Knoll-Fleming and Stephanie Blume are Evander’s speech language therapists. In speech therapy, Evander learns to communicate and engage with others in various ways such as using his voice, gestures and simple sign language. He also practices with a speech generating device.

“Evander is a fun, little guy with an amazing, supportive family! His family does an excellent job of carrying over communication strategies that he has learned during therapy sessions to integrate into his everyday life,” Beth and Stephanie report.   

Life at Home

Evander’s brothers are Sullivan, 11, Finnegan, 9 and Malakai, 6. Finnegan has Tourette syndrome, a condition of the nervous system that causes people to make sudden and repeated twitches, movements or sounds often called tics. Finnegan works hard to control his tics during the school day. Eventually the tics need to come out – often at home where there is no judgment.

“My boys are very close. They are not your typical rough and rowdy boys, which I’m totally fine with. It’s fine that the boys are sensitive. They are super understanding,” Ashley says.

Ashley makes sure she spends one-on-one time with the older boys since so much of her attention goes to Evander. Ashley and Luke never thought they’d be raising two children with very rare disabilities.

“Maybe, it’s because I’m a nurse, it’s meant to be. Down the road, maybe I can help someone else. This is my purpose. I do believe everything happens for a reason,” Ashley says.

Ashley focuses on being present in the moment and taking each day as it comes. She has lived with type 1 diabetes for nearly 32 years since she was diagnosed at age 8. She learned to manage it and take care of herself. It made her who she is today.

“It’s a daily challenge managing my own health and my children’s health,” Ashley says.

To care for herself, Ashley talks with a therapist regularly and relies on exercise for her mental and physical well-being. She shares that passion with her boys and works out with them to spend time together. Sometimes they do workout videos. Evander watches and gets excited when his brothers do jumping jacks. Nutrition is also important to Ashley. She has a big garden and teaches her older boys how to cook.