Rylan is a sweet, happy 7 year old boy. His mom, Jenny, describes Rylan as having a bubbly soul with an awesome personality who has a laugh that is so contagious he can get a room full of people laughing! He does NOT like to get up in the morning, enjoys watching Sponge Bob, and loves sports, music and the outdoors. Jenny wants people – family, friends, general public – to know, that Rylan is a normal little boy – a little boy who isn’t able to talk and uses a wheelchair to get around – but her normal little boy.
At two months old, Rylan was diagnosed with Frontoparietal Polymicrogyria. In utero, Rylan’s head was measuring large. He had several ultrasounds. Prior to his birth, Jenny was ultimately told that Rylan would have club feet, Down syndrome, and hydrocephalus. Further, she was informed that he would more than likely have to go straight to the NICU because he wouldn’t be able to breathe on his own. When he arrived, Rylan surprised all the medical professionals by appearing to be a healthy baby boy. Jenny was able to take her beautiful baby boy home right on schedule.
Two months later, Rylan’s pediatrician became concerned about the rapid growth of his head. He scheduled a CT scan which indicated some abnormalities in his brain. After that, Rylan was scheduled for an MRI. Jenny was heartbroken about having to have her two month old put under sedation for the MRI. Upon receiving a call from the doctors that they would like Jenny to come in for a meeting, Jenny was scared. Armed with loving support from her mom, Jenny was informed by the doctors that Rylan had severe abnormalities in his brain and they didn’t know what to expect.
The last 7 years have brought a lot of ups and downs for Jenny and Rylan. Along with his PMG, he is diagnosed with epilepsy, macrocephaly, cerebral palsy and some severe respiratory issues. Jenny has had a difficult time finding good doctors with knowledge of PMG. She has learned to stop, be patient and help educate medical professionals about Rylan and his complications due to his PMG.
Rylan just finished first grade!! He has had physical therapy, occupational therapy and speech therapy since he was about 7 months. All of his therapies are currently conducted through his school program. Rylan spent first grade as part of an inclusion program at his school. Jenny felt like she saw an amazing difference! He is much more vocal, communicates more frequently and attempts to do more things on his own.
Jenny and Rylan continue to live in their normal. Rylan is growing and making progress as children do. He is making friends in school and learning a lot. Jenny hopes that people put emphasis on teaching their children and families about children with special needs. She wants to make sure people talk to and communicate with Rylan. Just because he can’t ‘speak’ back, doesn’t mean he can’t communicate. As Jenny puts it, “Rylan is just like any other kid.”
You can read more about Rylan and continue to stay updated on his life by visiting Jenny’s blog, http://wheelchairsandhallways.blogspot.com/.
