By Hope Smith, OTAS, and Dustin Patterson, OTAS
Everyone meet Kelan! A very special boy with an even more special story to tell.
Mom and Dad, the Masinelli’s, knew Kelan was special from the moment they found out they were pregnant. They added a special sunroom for all his toys and the excitement continued to grow as they enjoyed 3 baby showers for their new bouncing boy.
Kelan was born on July 14, 2007 at 6:04 P.M. with no complications during labor or delivery. Mom, Jamie, says on her blog, “Both of us had anticipated this moment with excitement for years but never imagined how seeing Kelan for the first time would open up our hearts.”
This beautiful baby boy was everything they could have asked for. He was playful and strong. The Masinelli’s couldn’t wait to enjoy the new family life they had received.
Then, just 4 ½ months later their world was turned upside down. Kelan was diagnosed with Lissencephaly on December 10th after a week of seizures with no explanation.
Like most of you reading this, mom and dad had no clue what that was or what it held for their new child. In general terms, Lissencephaly is a rare genetic condition that develops when the fetus is 12-14 weeks old. This cannot be reversed and treatment aims to support and comfort the family and the child.
The life expectancy for a child with this condition varies but children with severe Lissencephaly only live to be about 10 years old. Some symptoms of Lissencephaly are difficulty feeding, muscle spasms, seizures, trouble swallowing and intellectual impairment.
Jamie told me, “When the Dr. came to tell us what was wrong we hardly heard a word he said. Just that our son would never walk or talk or sit-up on his own.”
This, as you can imagine, would be hard for any parent to hear. After digesting the information, the Masinelli’s decided they were not going to let this conquer their life. They decided that no matter what, they were going to give Kelan the best possible life that they could.
Throughout the years there have been many tough times including hundreds of hospital visits, countless sleepless nights, and many different medications. The struggles have been hard and his mom said, “This is not the life that we thought it would be but Kelan has made us the best versions of ourselves.”
Kelan experiences very frequent seizures (about 50 a day) and respiratory issues; he is also non-verbal.
Kelan started receiving Occupational Therapy on Feb 4th of 2008, which he continues now to help him with his developmental milestones. Even though there are lots of hard times, the good times make it all worth it. Kelan makes the best out of every day!
Though he cannot speak, he loves the color red. Balloons make him so happy and his little sister, Riley (7), makes him even happier. Over the years Kelan has grown a huge following. Everyone wants to help this super boy out!
Community members, organizations, family, and friends gathered together to make “A place for Kelan” which is an outdoor oasis that is safe for the family and Kelan to enjoy together. This hard work and dedication created one of Kelan’s favorite spots!
This was just the beginning of their journey! The Masinelli’s then set on their way with the Make a Wish Foundation to give back to the community while also helping Kelan.
They teamed up to create a wheelchair swing to go into a local park so that not only can Kelan enjoy, but other children in wheelchairs can enjoy as well!
This experience was heartwarming to all of us. Even though Kelan was nonverbal we learned a lot of things about him. Like, he loves the color red, balloons and being with his sister makes him so happy. In just a short time, he has already made an impact on all of us!
The trials this family faces every day are tiring and some days may seem impossible but with the help of his Occupational Therapists, Physical Therapists, Nurses, amazing family, and friends, Kelan has surpassed his life expectancy and this family continues to hope for more memories to come!
Kelan is sure to touch anyone’s life that he encounters. He is more than just his diagnosis. Kelan is strong, handsome, and more importantly a hero.
As his mother says, “I know what unconditional love is, and it is Kelan.”