ROCK OUT FOR JACK 3.0 FUNDRAISER

ROCK OUT FOR JACK 3.0 FUNDRAISER

Saturday, August 25 at the Lieutenant’s Pump

 

 

Jack is an 9 year old boy who was born with CHARGE Syndrome: a rare and life limiting disorder that arises during early fetal development and affects multiple organ systems.  Jack is Trach dependent, has a feeding tube insertion, and is deaf.  He has endured 19 surgeries to date, has had 2+ years admissions at CHEO, and he requires around-the-clock care.  Jack also suffers from severe autism and epilepsy.

 

Come out for a fun-filled evening in an intimate setting for the ROCK FOR JACK 3.0 Fundraiser, surrounded by awesome friends on Saturday August 25th in the Gallery Room at the Lieutenant’s Pump.

 

Happy Hour starts @ 6pm, with the Rock Out For Jack Fundraiser and Silent Auction to follow from 7pm until 10pm. Then be ready as the tables and chairs are cleared, the dance floor is ready, and The Pump’s DJ will get you in the groove to break out your dancin’ shoes.  PARTY AT THE PUMP!

Whether you are a friend of Jack, or you just want to support an inspiring young boy, or you and your friends want to get out for an evening of care-free socializing & laughter, dancing, and fun memories before the back-to-school craziness hits, we would love to have you. Everyone is welcome!

There is absolutely no charge for admission to Jack’s fundraiser, however donations will be gratefully accepted.

We are also in search of gift-in-kind donations for our Rock Out For Jack Silent Auction.

There is plenty of on street parking nearby, as well as parking lots and garages within walking distance.

 

A letter composed by Elizabeth (Jack’s big sister):

Rock Out For Jack 3.0 Fundraising Endeavour
Dear Friends,

I am writing to you on behalf of my 8 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 last year 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 & enternal feeding supplies) are roughly $20,000/year. Meds are $10,000 and incontinence supplies are $4,000 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
Please join us for a fun-filled evening of laughter, love, music, and a silent & live auction:
TBA
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)