On February 1, 2014 we experienced the miracle of life when our baby boy, Tanner Ashton entered this world. He was healthy, big and beautiful! We fell in love instantly! Around 3 months of age, we started noticing strange jerks, and within a couple of weeks they started happening more frequently and for longer periods of time, looking like seizures, which we now know were. We brought him to the hospital, showed some videos we had recorded of the seizures and was admitted. On May 13, 2014, Tanner was diagnosed with Epilepsy. Within our 5 day stay at the hospital, our poor baby was poked and prodded and stuck more times than most adults. It was an incredibly difficult time for my husband and me. But as hard as it was, the most amazing thing happened once Tanner was given medication. This adorable, loving, precious baby, who didn’t smile often and cried a lot, became that happiest, most fun-loving, playful, smiley, little boy! We felt blessed before, but seeing the change in Tanner’s personality brought happy tears to our eyes.
Tanner lived a seizure free life for 3 months. 3 months that my husband and I took for granted and will never do again. On August 8, 2014, Tanner started seizing again. In the past 3 months, we have experimented with 4 different medications, at a number of different dosages of each, and we have not seen any real difference. Today, Tanner is having anywhere from 1-4 seizures a day, every day, and when they came back in August, they took on a new form. They started lasting much longer and affected his whole body, rather than 1 extremity at a time, like before. On Halloween night, after a short neighborhood parade, Tanner started to feel a little warm. Within minutes, he spiked a fever of 104 and started having a Grand Mal seizure. His first. After a ride in the ambulance, a 45 minute seizure that finally ended and a weekend in the hospital, we were given a clean bill of health and sent home with Tanner back to “his normal”. After receiving all normal tests and MRI results, we did some genetic testing and Tanner’s results came back with a mutation called CDKL5. CDKL5 is a very rare neurological disorder that has sever disabilities associated with it. There are only 600-800 people in the world with this reported mutation! Tanner has been a fighter up until this point and will need to remain one for the rest of his life. He will have to fight to speak, walk, see, sit, use his hands, and lots more…but we KNOW he can do it.
As it stands today, Tanner is 9 months old and cannot sit up on his own, has major vision complications, cannot hold anything in his hands and still has some difficulty with eating solids. But he can roll from his stomach to his back, he can lift and hold his head up, he talks up a storm with ooh’s and aah’s, he is growing, has 7 teeth, he reacts to our voices and noises and smiles a lot! Tanner is beautiful and golden, in our eyes, in every way. We will love him, pray for him, provide for him and care for him for the rest of his life and we are hopeful that his condition, will improve over time thru medication, therapy and a cure! We appreciate the Epilepsy Foundation of Georgia for giving us the ability to tell our story and hopefully help others who may feel alone. Please know you are not! Please visit www.CDKL5.com to learn more about this terrible disease that is affecting our children each and ever day and how you could help.
With all our love,
Mom and Dad/Courtney and Brian Froy and amazing big brother Carson.
Shop for Tanner
On Wednesday, November 19th Range Boutique is hosting a fundraising event to benefit the International Foundation for CDKL5 Reasearch. CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro-developmental impairment. Please check out their event and stop by.