This is Jabyn with his parents Brad and Ashley Livingston. He was born on January 24, 2013. On July 7, 2015, Jabyn was diagnosed with Batten Disease.
Birth - 1 Year Old
For the first year, Jabyn was a thriving little boy. He was developing as a typical child would. He would play with toys, laugh, run around, he loved to be tickled and play with cabinets and doors. He loved anything Cars and Lightning McQueen. He could watch the Disney movie Cars over and over.
1 Year old - 2 Years Old
But shortly after his first birthday, Jabyn's development began to stop. He was not talking or using most of the major motor skills. He would fall and stumble a lot. He wasn't waving or clapping and these signs led us to start asking questions to his doctor. An MRI was done in October of 2014, which showed that (at that time we thought) Jabyn had suffered a serious injury to the brain at birth and was diagnosed with Encephalopathy. Seizures and other complications started to present over the next several months. Jabyn's daily experiences are days of aggression, frustration, constant crying, tremors, still no ability to talk, or use motor skills including the ability to walk without falling on a regular basis. This has also made it very hard for Jabyn to fully participate in any type of therapy. He has great therapist who are wonderful and are patient with him during his sessions, when he is having his bad days.
2 Years Old - Present
In February 2015, Jabyn completely lost his abilities to walk. What started out as him falling down and having trouble getting back up, quickly turned into him not being able to get up at all.
On July 7, 2015, we got the horrible news that Jabyn was diagnosed with Batten Disease. This is a very rare and sadly, fatal disease. Our world was shattered and broken when we found out the news. Our once thriving baby boy, was now being told that he would soon go completely blind, lose ability to eat and drink on his own and would become bedridden within just a couple of years. How do you process that? How does a mother and father handle news like that? Luckily we have had so much support and prayers come in from friends and family all over the world. We are not giving up on our son. Though the doctors say the worst will happen, we are believing for a healing miracle in Jabyn.
From our family and friends:
This has obviously created a huge financial hardship on the Livingston family. They have insurance but every visit (which are several per week) comes with a $40 co-pay for all doctor and therapy visits as well as expenses for gas, food, hotels, and loss of pay during the trips and days off that is required to get Jabyn to many of his appointments both in Pensacola and Gainesville.
We as family and friends have set up this account to let you know of the situation and to give you the opportunity to support Ashley, Brad & Jabyn financially during this most trying time. We are expecting good reports for Jabyn in the future but understand that Brad and Ashley have a trying emotional and financial road ahead of them. Anything you can give will be a huge blessing to them and their family at this time.