Thursday, February 9, 2017

Brave Story: 4 PAWS FOR ROBBIE

The following is taken from our Brave Stories community, where anyone can share thoughts, feelings, or stories about anything they are passionate about. If you would like to contribute to our Brave Stories or read more, please visit here: https://www.bravelets.com/brave-stories




I would love for you to meet Robbie. My son, Robbie, is a 13 year old boy from Lolo, Montana.
In 2003 about 6 months of age, Robbie was diagnosed with hypotonic Cerebral Palsy, Gorlin syndrome (a form of skin cancer) and a complete deletion of chromosome 9. His chromosomal disorder has no name as he is only the 2nd recorded case with this specific disorder. The consequences of his medical conditions include developmental delays, speech impairment, low muscle tone and difficulties with both fine and gross motor skills. At 7 years old, Robbie experienced his first tonic clonic (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 I am determined to seek out every possible opportunity for him 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 to not requiring any medical assistance walking, but he remained nonverbal for several years. We used sign language as the primary form of communication and occasionally still do after seizures. Even after 12 years of therapy 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 interrupted his developmental progress. The seizures are unpredictable and have no known triggers which continue to put his life in danger on a daily basis. He has had seizures in retail stores, school, the car, in our home and, over the summer while he was playing in the river.
In many ways Robbie is like a 'typical' teenage boy. He loves video games, riding bikes, swimming and has a mischievous sense of humor. His thoughts are filled with Star Wars and Toy Story and he carries no concern for his future....but I do.
 

I became aware of a program through 4 Paws for Ability, which provides service dogs to children with special needs. Similar to a Seeing Eye Guide Dog, a service dog can be trained to help assist with the daily difficulties that epilepsy and developmental disabilities generates for individuals. Our goal is to have a service dog that will be trained specifically for seizure detection and notification, behavior disruption, sign language, and tracking in the event Robbie would get lost or wander away. It is anticipated that the service dog could help Robbie with social interactions when he is out in public. The presence of a service dog can also be calming to Robbie when he displays his impulsive behaviors to express emotions. To acquire a dog tailored to Robbie's specific needs would help him become more independent and provide us with an additional level of safety. We feel a service dog is a necessity for Robbie's future so we applied for a Multipurpose Service Dog and are excited to hear that he has been accepted to the 4 Paws program.

As you can imagine, the cost associated with training a service dog is staggering. To help defray this cost, our family is 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. 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. 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
4 Paws for Ability
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

THANK YOU FROM THE BOTTOM OF MY HEART!
Robin Clason, Robbie's mom

You can also donate through the Bravelets Brave Page with a Bravelets product! Visit here: https://www.bravelets.com/bravepage/4-paws-for-robbie


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