Meet Jonny - Our May Kid of the Month

Meet Jonathan Barrington, also known as Jonny. He is just shy of a year and a half old and is a happy, active little boy. He is the joy of our life. He loves to play with toys that have lights or music and if they have both he is in heaven. Jonny also loves to look through toys that are translucent and see the light in different colors. He is always exploring toys and objects with his hands, mouth and eyes.

Jonny was born with Lowe Syndrome. Lowe Syndrome is a rare syndrome (about 1 in 500,000 people) that affects the eyes, kidneys and brain. It is a sex linked recessive genetic condition that women carry and males are affected by. Boys are born with cataracts, cloudiness on the lens of their eyes, and often have Glaucoma, an increased pressure inside the eye. Their kidneys do not function properly which makes it hard for them to put on weight and keep the nutrients that they need to grow and have their bodies function properly. These boys also have varying degrees of mental and physical handicaps, anywhere from moderate to profound.

Jonny was born in November of 2013 at the U of U. He spent his first ten days in the NICU because of breathing and eating issues. In his first 6 months of life, he had 5 surgeries and 8 other exams under anesthesia to take care of the glaucoma issues and cataracts on his eyes. He is a trooper and did so well with all of these procedures. He can see well with his glasses now. He can see a little without the glasses but it is not very focused. We hope to have artificial lenses implanted in his eyes about the time he turns 3. We work with a vision specialist from “Kids on the Move”, which is the Early Intervention program in our area, to help him maximize his vision and learning.

Jonny’s growth had fallen off the charts in the fall of last year and he was not taking in enough fluids to be well hydrated either. His kidney doctor recommended that we have a g-tube placed. This would make is so he could get the nutrients and liquid volume he needed. He had the surgery to place the g-tube in October at Primary Children’s Hospital and he did exceptionally well. Since that time, he has put on weight, grown taller and he has a lot more energy.

Jonny has low muscle tone and so we work with a Physical Therapist to help him exercise and gain strength. We are working on sitting up independently and also the skills to help him learn to crawl. Jonny loves to hang out in his bouncy saucer. It is really helping with his leg strength and balance. He also loves to roll around on the ground and explore his world.

He is very social and loves to babble, play and listen to upbeat music of almost any variety. He also enjoys finger play like pat-a-cake and itsy bitsy spider. He has several words in his vocabulary, but his favorite word is Mom.

We treasure every step forward that Jonny makes. He is our sunshine and he spreads joy and love with his smile. This journey that we started when Jonny was born has been hard at times but overall we have had a very positive experience. We have had to adjust our perspective on what we expect but that has allowed us to enjoy our little boy even more. We see the world through different eyes and we try not to take anything for granted. The love and support we have received has been wonderful. We couldn’t imagine life without our Jonny. For more information on Lowe Syndrome you are welcome to visit the Lowe Syndrome Association website at http://www.lowesyndrome.org/