Kevin’s Story

Hi, my name is Kevin Lewis and I am 9 years old. I live in Jonesboro, Arkansas, go to Jonesboro Math & Science Magnet School, am a Cub Scout, play baseball for the Miracle League of Jonesboro and participate in Special Olympics track and field and basketball events. My Mommy and Daddy are working on getting me a service dog so that he or she can help me be more independent, protect me and help calm me in situations where I am anxious or scared. Here’s my story…

Kevin was born on August 4, 2007, and was a full-term, healthy baby. Kevin had a little trouble feeding initially but this was not much of a concern because after finding a good bottle he ate just fine. In fact, you couldn’t keep him full.  Kevin continued to develop normally until he reached the age of about 6 months. At this time, Kevin was still unable to sit up on his own which is a milestone he should be reaching by this age. When discussed with his pediatrician at his six month well visit, she said that we were not going to get concerned just yet. If he was doing this by his 9 month visit then it would be on the back end of the norm, but nothing serious warranting further investigation. Then, on April 8, 2008, Kevin was dropped at daycare where he sustained a skull fracture. He was admitted to the hospital overnight for observation as a precaution but he was concussion-free and, besides the fracture itself, only had a minor subdural hematoma. We were discharged the following day with instructions to follow up with his primary care physician.

At his follow up appointment, his doctor gave me the results from the CT scan that was done in the hospital which were not explained to me while we were there. She said the radiologist noted pachygyria and schizencephaly. While trying to keep me calm and from jumping to conclusions on what this meant for Kevin, she told me not to worry just yet because this radiologist probably didn’t regularly look at brains in children his age and that she would refer us to a pediatric neurologist for further work up and diagnostic testing. We were sent to St. Louis Children’s Hospital in May of 2008. The doctor there officially confirmed the diagnosis of pachygyria but said we needed more in-depth imaging to definitively determine whether or not he had schizencephaly. Kevin was scheduled for an MRI at the end of June that same year. Thankfully, he did not have schizencephaly which is typically a fatal condition. He was, however, diagnosed with congenital bilateral perisylvian syndrome (CBPS).

 While pachygyria is slightly more common, both conditions cause similar symptoms/side effects. Secondarily to CBPS and pachygyria, Kevin also has laryngomalacia, sialorrhea, scoliosis due to leg length discrepancy and epilepsy. He also has several behavioral issues and ADHD-like symptoms. Kevin receives physical therapy, occupational therapy and speech therapy on a constant basis and has since he was just a little over a year old. In addition to his therapists he also sees a regular pediatrician, an otolaryngologist (ENT), an orthopedic surgeon, a neurologist and a psychiatrist. He has had four surgeries to correct his sialorrhea and one to improve his hearing function. His scoliosis, at this time, is just being monitored and treated with a special shoe orthotic and physical therapy, but surgery may occur in the future should it progress to a level that hinders his daily function and breathing. We have been told that he will definitely need surgery in a couple of years to correct his leg length discrepancy and pelvic tilt. This will be a very extensive surgery that will actually lengthen his bone to correct the discrepancy. His liquids have to be thickened to a nectar consistency to prevent aspiration and resulting illnesses/infections. His neurologist monitors and manages his seizures and the psychiatrist manages the behavioral issues and ADHD-like symptoms.

As a result of Kevin multiple medical conditions and the many doctors’ appointments needed to treat and manage said conditions, Kevin struggles with anxiety directly resulting from those trips and the fear of what happens during and/or after those trips (ie: surgery). He also struggles with social interactions due to the developmental delay that puts him behind that of his “neurotypical” peers as well as some of the symptoms, like sialorrhea, that create a social stigma. Another problem that has become increasingly worse is wandering. There have been multiple occasions where Kevin wanders off, or maybe is playing with other kids who then take off and leave him, and when he is called for does not respond. He also can be aggressive due to frustration from not being able to communicate his needs and wants, from not understanding a situation, from being put in situations he isn’t comfortable with, etc. A service dog would be able to accompany Kevin to appointments and new places to ease anxiety, be with him as a constant companion in case he wanders or is in an unsafe environment, calm him down when he is frustrated and aggressive, protect him from anyone trying to harm or take advantage of him, and could also even serve to remove the social barrier between him and other “neurotypical” children. The dog may also be able to eventually sense Kevin’s seizures and alert us to them.

The Service Dog

We have spent a lot of time researching breeds and consulting with breeders and trainers to find the best possible dog for Kevin. Things we took in to consideration for choosing a breed was their temperament, life expectancy, how bad they shed, size, energy level, how easily they could be trained by a child, etc. With all these things considered, we feel the English Cream Golden Retriever would be the best fit for Kevin and that the particular puppies we are looking at, Willowcross Goldens, are some of the best available. You can visit the website at www.willowcrossgoldens.com .
The trainer we plan to use, Blake Bristow, is a Jonesboro police officer and K9 handler who runs Blue Streak K9. You may visit the website at K9 handler website.

Cost Breakdown:

-Dog: $2500

-Training: $1200-$1800

-Certification: $75 (this is a certification test and photo ID of the dog that can be presented if we are questioned)

-Miscellaneous Equipment: $500-$600

-Vest (we will need to purchase at least two: a small one to start and a larger one for when its grown)

-Patches (“Service Dog in Training”, “Service Dog”, “Working Dog, Do Not Pet”, the dog’s name, etc.)

-Collar, Leash and Tether

-Seat cover for daily travel

-Bed and training crate

-Food/water bowls

-“Doggy Diaper Bag” (since the dog will travel everywhere with us we will need to carry food, water, small bowls, pad, etc.)

-Spay/Neuter: $150

Additional/Optional Costs:

-Animal Health Insurance: $25-$45/month
             
Again, cost can vary greatly depending on the breed, the trainer and how much training the dog requires but any amount put towards the overall cost helps. Thank you for taking time to review this information and to consider helping in our fundraising efforts.

We would like to be able to get the service dog for Kevin as soon as possible because medical personnel assigned to Kevin believe that this is a necessity for his condition. The sooner we get started the better the results for Kevin in the long term.

Any and all help will be extremely appreciated. God bless you all in advance for your consideration to this cause.

All money raised will be used towards the above costs and any unforseen costs associated with the K9.