CJSTUF caught up with one of our favorite grant recipient families, The Hamilton Family, to talk about how their lives have been impacted by their son Ethan’s diagnosis, treatment, and how CJSTUF has helped make their days just a tiny bit easier. Even though life is never dull, Ethan’s mom Laura took some time out of her day to answer a few questions for us!
Can you summarize Ethan’s story for us?
Ethan was born 6 weeks premature with multiple birth defects. At the age of 3 months he had the first of 10 surgeries to repair urological birth defects. After traveling to three different states, participating in 37 different genetic tests and being a patient at the National Institute of Health, a diagnosis of Mitochondrial Disease Complex I and ATR-X Syndrome was diagnosed. Both diseases are rare and both limit your lifespan.
How did you learn about CJSTUF?
Our family followed Charlotte’s story through friends and social media. We became aware of the foundation while attending a birthday party at Romp n Roll in Mechanicsville. At the time Ethan was almost one and we decided to have a “Birthday Party for CJ”. Instead of gifts we asked friends and family to make a donation to CJSTUF in honor of Ethan’s first year of life. We were honored to give back to the community but little did we know that one day we would end up benefiting from CJSTUF as a Financial Grant Recipient.
How do you feel CJSTUF has supported your family?
CJSTUF supported our family with financial assistance that allowed us to purchase an iPad. The iPad has been used for comfort for Ethan during his many hospital visits and appointments. He also has been using it as a learning tool and has helped Ethan improve his communication skills. Not only did the grant allow our family to purchase something for Ethan to help comfort him but it allowed us to do something for Ethan that was “fun”. Children with chronic and life threatening illnesses often do not get “extras” because of the extremely high cost of healthcare including medications, equipment and hospital stays. The grant allowed us to give Ethan a bit of sunshine in a time of dark clouds.
What do you think is the biggest challenge for a family of a child with a story like Ethan’s?
I would say the biggest challenge for a family like ours is dealing with the reality of what our life will be like in the future without our child while living in the present and enjoying the child we have today.
What would be one thing you wish people knew about CJSTUF?
I wish people knew how amazing Charlotte’s parents are. Not because they had and lost a child with cancer but because out of the terrible pain and loss they made something so beautiful and helpful for other children and their families.
If you are interested in keeping up with Ethan and his family, you can “like” his Facebook Page called “Energy for Ethan.”