I would love for you to meet Robbie. My son, Robbie, is a 13 yr old boy from Lolo, Montana.
In 2003 at about 6 months of age, Robbie was diagnosed with hypotonic Cerebral Palsy, Gorlins syndrome (skin cancer) and a complete deletion on chromosome 9. His chromosomal disorder has no name as he is only the 2nd recorded case with this specific disorder. Consequences include developmental delay, speech impairment, low muscle tone and difficulties with both fine and gross motor skills. At 7 years of age, Robbie experienced his first grand mal seizure and was diagnosed with Epilepsy. With therapies and diligent care, Robbie is fighting the odds and progressing; however, he will never be able to live alone and requires continual care. As Robbie’s mother, my mission is to leave no stone unturned in my quest to give him every possible opportunity to lead a happy and fulfilling life.
LIVING WITH A SPECIAL NEEDS CHILD
When he was a baby, we started multiple therapies not knowing if the efforts would have much effect on his outcome of life since the genetic specialists had no idea what the prognosis for Robbie’s life would be. Robbie started an intensive therapy program right away. Robbie was happy and willingly worked hard amidst all the expectations that we, as his family and medical team, had for him. Eventually he progressed to wearing leg braces and using a walker. He remained nonverbal for several years and we used sign language as the primary form of communication, and still occasionally use after seizures. Even during good times, his speech is still quite difficult to understand and makes communication challenging.
Of the multiple medical challenges, Epilepsy has been the hardest on our family. The side effects of the numerous medications we have tried have altered his personality and have seemed to interrupt his developmental progress. The seizures are unpredictable and continue to put his life in danger on a daily basis. He has had seizures in retail stores, school, the car, our home and over the summer he had one in the river.
HELP IS ON THE WAY
I became aware of a program through 4 Paws for Ability, which provides service dogs to special needs children. Similar to a service dog for people who are blind, service dogs can also be trained to help cope with the difficulties of people with epilepsy and developmental disabilities. The task of the service dog would be to alert an adult (i.e. para educator, caregiver, or therapist) that is close by of oncoming seizures and/or to track him should he wander away. A service dog would also be calming to Robbie when he displays his impulsive behaviors to express emotions.We feel a service dog is a necessity. A dog tailored to Robbie’s specific needs would help him grow more independent and provide a level of safety. The dog would also ease the burden that his disabilities place on our family. An application for a service dog through 4 Paws for Ability was accepted for Robbie. The service dog will be trained for epilepsy seizure notification, behavior disruption (self-harming, meltdowns), and tracking in the event Robbie would get lost or wander away. It is anticipated that the service dog could also help Robbie with social interaction when he is out in public with his service dog.
As you can image, the cost associated with training a service dog is staggering. To help defray this cost, we committed to raising $17,000 in support of the 4 Paws mission. From birth through training, the cost of placing a Multipurpose Service Dog in a family like ours is at least $36,000.00. This does not include the personal expenses of traveling to Ohio for two weeks to receive the appropriate training before bringing the service dog home or the expenses associated with caring and raising the service dog. A multipurpose service dog would benefit Robbie and the outcome of his life in immense ways. Robbie will always require some type of assistance and supervision.
HOW CAN YOU HELP?
If you or your business is interested in supporting 4 Paws for Ability in honor of Robbie, please make a personal or business donation to:
4 Paws for Ability, Inc.
In Honor of Robbie Clason
253 Dayton Avenue
Xenia, Ohio 45385
Checks should be made payable to 4 Paws for Ability, Inc. and mailed directly to 4 Paws. It is requested that you write “In Honor of Robbie Clason” in the memo line to give credit for a donation to Robbie.
You can also support him with a credit card donation through his Razoo page, which is https://www.razoo.com/story/Gulv1g
THANK YOU FROM THE BOTTOM OF MY HEART!
Robin Clason, Robbie’s mom.