Emerson was born at 25 weeks gestation weighing only 1.5 lbs (about the size of a pop can). She is our surviving triplet (this means she had a triplet brother, Cody, and sister, Keely, but they passed away in the hospital when they were 6 weeks old). We spent 4 months in the  NICU with Emerson. When she was about 5 months old we noticed she wasnt moving the way the other kids her age did. We starting investigating and she was diagnosed with cerebral palsy. 

Over the years her diagnosis has changed several times but all within the cerebral palsy realm. Her current main diagnosis is a rare form of cerebral palsy called severe dyskenetic dystonic cerebral palsy. Essentially she tells her muscles what to do and on the way out of her brain the messages get scrambled and there are not enough signals or too many signals going to the wrong muscles. Sometimes her muscles can get stuck in a pattern and they will start to die and without medical intervention this could cause kidney failure. We are currently stuck in one of those patterns and have been at BC childrens hospital since feb 26th. It has escalated and we are in the PICU and have been since march 5th, we don't see an end in reach yet.  We really want to thank everyone who has helped us get all the equipment listed below,  it has all been life changing. We can't wait to get back home and continue on working on school and therapy.


Because her cerebral palsy affects every muscle in her body it is hard for her to talk and a lot of the time hard for her friends and people who dont know her to understand her. Part of her success in school and in life will require her to have a communication device which she will control with her eyes. The device tracks her retina and she can select buttons like using a mouse with only her eyes. It will allow her to talk through the computer, access school curriculum, access the internet and play games by herself. ( she has never had the opportunity to play anything on her own she always needs an adult to facilitate play) her eye gaze system will cost over $12000.  

https://youtu.be/jK8RZwcdjYE 

She is also wheelchair bound and is now getting too heavy to transfer to her carseat and getting to big for her carseat. She need an accessible van to get to school and town. He have purchased a new van but have to have it converted. A simple conversion costs over $16000.  


 Another goal we have for her is to feed herself. We would like to purchase the OBi robot feeder. It is a robotic feeder which she can control by two switches (one to pick which dish of food the other tells the arm to bring the spoon to her mouth) we will be trialing this robot in the next few weeks and are hoping for success.  This robotic feeder is $6000 USD.  

https://youtu.be/wancA0DNcF4 

Emerson has the most amazing smile and laugh, she has a great sense of humor and we would love for her to continue accessing and being part of the community. We wish we could give her the world. Every donation helps big or small. Emerson and her family are very grateful for your help  Thank you so so much for your support