The following fundraising letter was composed by Jack’s sister, Elizabeth
Dear Friends,
I am writing to you on behalf of my 9-year-old brother and my Dad. I would love to share our storied journey with you.
Jack was born in June of 2009 with many severe disabilities and life-limiting conditions. He is medically fragile and requires 24-hour nursing care. Jack was born with an uncommon syndrome named CHARGE. This syndrome is the leading cause of blind-deafness in children. Jack is deaf, with some vision impairment. He has a tracheostomy and a feeding tube. And he is mostly confined to a wheelchair (although he took his first unassisted steps recently at school (we never knew if Jack would ever be able to walk). Jack was also recently diagnosed with severe autism; less than the first percentile. We have never heard Jack’s voice. I cannot wait for the day I hear his first words. We’ve never been able to snuggle with Jack at night. He is hooked up to 4 machines periodically throughout the night. Jack’s mom has not been employable since Jack’s birth as she is not only his mom, but his nurse who has been trained by the staff at CHEO to care for Jack and to use life-saving measures if necessary.
Jack was admitted to CHEO on November 8th for his 19th surgery. He has unfortunately spent over 2 years at CHEO altogether. CHEO has been like a 2nd home for our family.
Exactly 3 months after Jack was born my dad was diagnosed with guarded, high risk Melanoma, with a 6-month prognosis. Jack was in the midst of a 3-month hospital stay when Dad was diagnosed. Since both his mom and dad were trained to care for Jack, they split 24 hour rotating shifts at his bedside. That was the toughest, most emotional few months that we have ever endured. My dad tried not to break down as he held Jack, but knowing he would grow up without a father was too much to grasp. The CHEO team saw our emotional struggles, and set us up with a social worker at the hospital. We’ve been met with love and compassion throughout our entire experience with CHEO.
My dad remained in hospital for 3 weeks after his first surgery. The good thing was that the 2 hospitals were connected by a tunnel. Jack’s mom spent her days running back and forth between the two hospitals.
In December 2015 my dad was hit with a major depression disorder (Doctors expected it to happen much sooner). Walking on eggshells with his health and his son’s fragilities, the recent passing of his father, added pressure at work, and a marital breakdown with Jack’s mom resulted in a significant decline in his mental health. On a positive note, the duration Dad has remained at home helped him develop a bond with Jack that is much stronger than we could ever pray for. He has truly enjoyed being a stay-at-home dad for this exact reason. Unfortunately, Dad has had to resign from work as a result of the physical and emotional scars left behind by cancer, which left him broken, beat, and scarred. Unfortunately, he will never be in remission, but he made a promise to us that he will continue to fight!
Because of dad’s illness, and mom being Jack’s full-time nurse, they are without private insurance. Although there is some support from government affiliated agencies, the out-of-pocket expenses for Jack’s care are astronomical. Life sustaining supplies and equipment (tracheostomy & enteral feeding supplies) are roughly $34,000/year and incontinence supplies are $5,400, which is a portion of the cost of raising a medically fragile child. Although Jack still faces a morbidity/mortality rate he continues to enjoy life with enthusiasm.
To our friends, we are graciously hoping for your support for this upcoming benefit fundraiser for Jack, and we are gratefully accepting gifts in-kind to benefit a silent auction leading up to the event.
If you have any questions, comments or concerns please feel free to contact me at your convenience.
Thank you for reading.
Elizabeth Brown and family (Greg, Susan, and Jack)
Jack August 2019 Celebrating his Father’s Birthday with his sister Elizabeth & Mom
(Taking Pictures)
“They are the beat of my heart, the pulse of my veins, and the energy of my soul. They are my kids.”
– Author unknown