First, I want to introduce myself and my family. I am 13 years old. That’s my dad Vic in the picture with me. He loves being my dad. I have a rare disorder called pontocerebellar hypoplasia type II. That’s a really fancy way of saying I have challenges developmentally, with motor and seizure disorders. I know what I want my body to do, but my brain doesn’t send the right signals to let me do it. Life can get quite challenging.
I really enjoy many of the things that kids my age enjoy. I have a new pet fish named Fin. He is a beta. He lives in an acrylic bowl mounted to my wall. And when I go to sleep at night, I give him a little wave goodnight. It’s nice to have a roommate.
I love watching nature documentaries. My favourite animals are seals. My mom took a picture of me with one of my biggest smiles while I was watching the seals in the Vancouver Aquarium. I also really love dolphins and butterflies.
I want to tell you all about my baby sister. I look out for her. She is my favourite person in the world. I was 2 when Zaria was born. My mom even let me hold my baby sister when she was just very little and it was the best thing ever. We love snuggling. My sister has the same disorder that I do. I will let her tell you more about her a little later.
I love swimming. There is a pool in Rutland, BC that is a 45 min drive from my house. Although there are closer pools, this pool is better for accessibility and accommodations for disabilities.
I love being able to go on outings with my family. We would really like to be able to take road trips as a family. Right now, the van we have is not big enough. Our caregivers usually injure themselves just trying to get us in and safely secured. Having a movement disorder means sometimes my limbs do things that I don’t want them to do, like accidently whacking my sister in the face while we are driving or injuring myself by stubbing my toes on the seat in front of me. We are packed in like sardines and there isn’t much room for all the equipment that we need to facilitate our lives. We need more room for our caregivers and educational assistants to be able to travel with us. Having our EA’s with us will open up more community involvement and activities.
(This is a pic of me with my mom Cathy)
We live in a rural area in the Okanagan and all of the medical specialists that we need to see are a 6 hour drive away in Vancouver. We need a vehicle that will enable us to travel more comfortably.
The long drive to Vancouver does not have proper accessible washrooms any where along the route. So, we could really use a vehicle that is large enough to handle our full-size changing station with a ceiling lift to help us onto the change table. I am a teenager now and have grown. It is no longer safe for a two-person lift-and-carry technique to be used to move me from my chair onto a change station. We need a van that has a ceiling lift to keep our staff safe from workplace injuries.
And now, I’ll let my sister introduce herself.
Hi I am Zaria. I love being Ana’s sister. But my personality is quite different from my sister. You could say I am a little sassier that she is. My mom Cathy says I am ALL Personality! I like fashion. If it is pink and sparkly, sign me up! I love tea parties and going to restaurants just to be around people. I really like people. I like watching Disney movies and singing and dancing. When Calls the Heart is my favourite TV show. When we get a bigger van, I am going to take a trip to Langley, BC to visit the set where they film the show. My favourite animals are otters because they are cute and fluffy and hold hands when they sleep.
This fundraiser is to purchase a new 2020 RAM Promaster 3500 van and we were given a quote for the purchase of the van and the modifications to make it wheelchair accessible and safe. We would also need to install a change station in addition to these modifications. Although this van might seem large for just the 4 of us, we also want to have room to travel with our nursing staff and our education assistants.
(van picture for reference only. Not the van we wish to purchase)
We used to be able to turn to charities like Variety and their Sunshine Vans Program, but the applications process is closed.
We would be so thrilled as a family to have the ability to travel with dignity, safety and comfort for our many medical needs and also to have the added bonus of being able to visit amazing sites in our beautiful province of British Columbia, Canada. We are so grateful for any support you are able to give us. If you can't support us monetarily, please share this far and wide. Every little bit helps!!
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