Ethan's Journey
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Hi, I'm Ethan's Mom and I'm here to ask for some much needed help.
Ethan is almost 13 and was born with a condition called Arthrogryposis Multiplex Congenital, which translates to curved joints. People with this condition have very little or abnormal muscle fibrosis of their tissues and therefore have very limited movement.

Ethan gets around with the help of an electric powered wheelchair that he operates using his head, It is the only real area of his body he has movement in.
On August 11th Ethan had to get a very serious spinal operation in Vancouver Children's Hospital. The surgery was supposed to be 8-10 hours; it took 18. Ethan crashed on the table and had to be resuscitated.

August 29th Ethan was diagnosed with a necrotic infection in the cavity surrounding his lower back. What was supposed to be a recovery time of 2 weeks is now months. He's had to have repeated surgeries to clean the wound since. Multiple vacuum changes are difficult as he now has hyper sensitivity in the surgical areas. He needs to be anesthetized every week in order to change his wound vacuum. He recently had a G tube surgically inserted into his stomach as he cannot eat the amount of calories he’s needed to heal. He needs atleast 3000 a day.
His stay in the hospital has now been extended to many more months; the fear of being away for Christmas is looming. Ethan should be looking forward to having started grade 7, he’s also missed Halloween with his friends , instead he is now facing this long road of recovery.
Just prior to Ethan's surgery on August 6th, some joy was brought to our family as Dustin and I had our first daughter together. As a preemie, she was a NICU patient for two weeks, but is now doing fantastic. Sadly Ethan has yet to meet his baby sister and interact with her since she's been home from the hospital.
Ethan's father Dustin has been in Vancouver for almost 3 months now. He's only been able to see his daughter a handful of times and continues to miss her ever changing development so that he can be there for the love and support of Ethan.
Dustin hasn't been able to work since leaving and the financial hardship has taken a toll on our family. Between my maternity leave which is unpaid; on this side and Dustin staying with Ethan in Vancouver, expenses are piling up.
We would really appreciate any help that you may be able to give us during this difficult time. Thank you in advance for your well wishes and thoughts.
Ethan is almost 13 and was born with a condition called Arthrogryposis Multiplex Congenital, which translates to curved joints. People with this condition have very little or abnormal muscle fibrosis of their tissues and therefore have very limited movement.
Ethan gets around with the help of an electric powered wheelchair that he operates using his head, It is the only real area of his body he has movement in.
On August 11th Ethan had to get a very serious spinal operation in Vancouver Children's Hospital. The surgery was supposed to be 8-10 hours; it took 18. Ethan crashed on the table and had to be resuscitated.
August 29th Ethan was diagnosed with a necrotic infection in the cavity surrounding his lower back. What was supposed to be a recovery time of 2 weeks is now months. He's had to have repeated surgeries to clean the wound since. Multiple vacuum changes are difficult as he now has hyper sensitivity in the surgical areas. He needs to be anesthetized every week in order to change his wound vacuum. He recently had a G tube surgically inserted into his stomach as he cannot eat the amount of calories he’s needed to heal. He needs atleast 3000 a day.
His stay in the hospital has now been extended to many more months; the fear of being away for Christmas is looming. Ethan should be looking forward to having started grade 7, he’s also missed Halloween with his friends , instead he is now facing this long road of recovery.
Just prior to Ethan's surgery on August 6th, some joy was brought to our family as Dustin and I had our first daughter together. As a preemie, she was a NICU patient for two weeks, but is now doing fantastic. Sadly Ethan has yet to meet his baby sister and interact with her since she's been home from the hospital.
Ethan's father Dustin has been in Vancouver for almost 3 months now. He's only been able to see his daughter a handful of times and continues to miss her ever changing development so that he can be there for the love and support of Ethan.
Dustin hasn't been able to work since leaving and the financial hardship has taken a toll on our family. Between my maternity leave which is unpaid; on this side and Dustin staying with Ethan in Vancouver, expenses are piling up.
We would really appreciate any help that you may be able to give us during this difficult time. Thank you in advance for your well wishes and thoughts.
Organizer
Vanessa Copeman
Organizer
Victoria, BC
