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Narcolepsy w/ Cataplexy service dog

Hello! My name is Angela and I am Shyla’s Mom. I write to you today to see if you may be able to help us in raising funds for a service dog and training to assist Shyla with her Narcolepsy with Cataplexy. Here’s her story.

Her father is a Veteran of United States Air Force of 23 years. We thought we had made it through tough times after 14 deployments. We decided to move back and start our new life as a family ( older brother, younger sister) here in Ohio where I grew up. Our past life has had no comparison to how we are feeling about Shyla’s new life. She is an active girl, she loves basketball and plays tackle football and plays softball. She absolutely loves school. She runs around our property and enjoys the hobby farm life. She’s having problems as you can imagine with people thinking something is wrong because she laughs differently and falls every time. And people thinking she’s disengaged in the classroom or saying “ you look like you’re on drugs”. We don’t want her to not laugh we just want her to be safe. Just yesterday, 5 feet away from me she went so quickly she bounced her head off a table at a store. I can not be on her heels every moment but a service dog can be.

Shyla just turned 10 in June. In August after a very rough month of thinking she was having seizures we found out that she does NOT but.. she was diagnosed with Narcolepsy with severe Cataplexy. Most people are aware that Narcolepsy makes you tired a lot and it’s uncontrollable, but what they don’t know is that some also have the cataplexy. Only 1 in approximately 2000 people have narcolepsy and of those ones only 60-70% have some function of cataplexy. When Shyla laughs and/or smiles, her eyes roll in the back she gets a fuzzy look and looses all muscle control dropping her to the ground in a paralyzed state. It lasts for a minute or so but she is aware of her surroundings but can do nothing to stop these attacks. The longer she laughs in her head the longer the attack lasts. As you can imagine it’s rough for her because her body does not care if she is in a safe place it just fails her and what 10 year old doesn’t want to laugh and play? This is NOT something that will ever go away for her. Medicines help her stay awake for school and sports but her cataplexy medicine give her insomnia which is terrible because she also has night terrors and hallucinations from the narcolepsy. What we don’t realize is that someone with narcolepsy feels as though they have not slept for about 72 hours. Now imagine being tired like that but having insomnia? I’ve also read the quality of life is like that of someone with Parkinson’s.

The help? We would like to get a service dog for Shyla. We have lined one up that has begun training and will be able to join us very soon. He still has lots of training to accomplish the tasks to help provide her with a safe environment. He will most importantly eventually be able to trigger an alarm if she gets hurt when she collapses, stand strong as a table if she falls into an uncontrolled sleep or simply goes down in a cataplexy attack. Also learn to keep her awake hopefully long enough to get where she can rest in a safe place. He will serve many other purposes as a service dog. We also hope that him being by her side, she will be able to refocus, her laughing has made it to where others feel it is necessary to bully and make fun of her, she angers by this and well she should be able to laugh no matter if it “ makes her different”. It’s not safe when she collapses but some are finding it funny to encourage to where she collapses as they can continue to be mean. She hopes she can refocus and get away. But we will be needing to spend a lot of time and money with trainers over the next couple of years, so that he can continue to learn ways of helping Shyla as we find out more things about this disability and what it comes with.

If you are like me and look up this disability you will be completely shocked. Severe Cataplexy is said to be about 2-10 episodes a month. Shyla has 20 or 30 or more a day depending on how often she smiles or laughs. Medication helps a little but does not eliminate the collapsing. Even with medication we have to keep her going with scheduled naps and tight schedules. It’s hard for her to keep her sports but exercise is completely needed with this disability too.

So if there is any help that you can accommodate with in raising funds towards this service dog in training we would greatly appreciate it. Our goal with all the help from friends, family and community is $20,000. It’s a lot I know but any amount that can be contributed will go towards training and helping with this service provider for Shyla.

Thank you for your thoughts,
Shyla & Thomson Family
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Donations 

  • Heidi Panos
    • $100 
    • 5 yrs
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Organizer

Angela Lewis Thomson
Organizer
New Carlisle, OH

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