Ellary Kinnane

Country of Origin: United States
Birth Year: 2007
Gene Subtype: ACTA1

I am on a ventilator 24/7.

 I use a power chair to get around. I am non-ambulatory.

I have a G-tube and use a formula called Liquid Hope.

What are your greatest challenges?

Speaking to new people because I am hard to understand. And not being able to do all the activities that my friends do, which can lead me to get left out sometimes. 

What accomplishments are you most proud of?

I am most proud of getting all A+’s in 7th grade during distance learning. I am also proud of getting A’s in both of my challenging honors classes this year in the first quarter. 

I am also proud of going around my neighborhood in the summer and advertising for a slushy stand that me and my sister run. I had to go up to almost everyone I saw and ask them if they wanted to buy our slushies. This was nerve-racking for me because I don’t really go anywhere without someone else or talk to people by myself. I was worried that they might not understand me, but I ended up bringing in a lot of customers. 

What tips or hacks do you have for making life easier?

  • I have assistive touch turned on so that I can easily turn on and off my iPad, since the buttons are hard to press. I also have a keyboard case on my iPad that has a mouse pad that makes it easier to navigate my iPad. Although it was not cheap, it is very good quality and very helpful.
  • Eraseable pens make my life easier. Although they are harder to erase than pencil, they are much easier to write with. I use them everyday for school
  •  I use a custom floaty made with an inner tube. This helps me to be independent in the water. 

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