I hope this message finds you well.
We are planning, organizing, and hosting a “Rock Out For Jack” fundraising event for our son and brother, Jack. And we would love to share our storied journey with you.
Jack was born with several severe disabilities and life-limiting conditions. He requires around-the-clock nursing care. His mom hasn't been able to work since Jack was born, as she is Jack's primary nurse. We are without private insurance. The costs of his life sustaining supplies alone (tracheostomy & enteral feeding) are astronomical.
Jack is a 9-year-old boy who was born with CHARGE Syndrome; a rare and life-limiting disorder that arises during early fetal development & affects multiple organ systems. Jack is Tracheostomy dependent, has a feeding tube insertion and is deaf. He has had 19 surgeries to date (#20 coming soon). Jack has had numerous admissions to CHEO totaling over 2 years, and he also requires 24-hour nursing care.
The fundraising event will occur on Saturday September 28th, 2019, at The Lieutenant’s Pump British Pub, located here in downtown Ottawa at 361 Elgin Street.
We will be operating a public Silent Auction event on Facebook on our “Rock Out For Jack’s” page. All donors are gratefully acknowledged on this public event, and a link to their Facebook page and website will also be incorporated.https://www.facebook.com/Rock-Out-For-Jack-302178110388006/
We would be ever so grateful if you were able to kindly support our family, with a gift-in-kind donation for our silent auction.
We also have a GoFundMe link available:www.gofundme.com/jackbrown
Our intentions for 2019 are to apply as an exhibitor to several local festivals throughout the year, ending the festival season with a fundraiser/silent auction party with a date of Saturday September 28th.
I have applied to the many fairs and festivals around the Ottawa area, for a possibility of being a charitable vendor exhibitor. While many have yet to finalize concession details, I'm proud to note that The Ottawa Beer Fest has welcomed “Rock Out For Jack” with open arms (www.ottawabeerfest.com). This is one of the first festivals of the year (May 10th & 11th) and several thousand craft beer lovers are expected to attend.
We had an amazing time last year participating in two music festivals (RebelFest & Calabogie Blues & Ribfest). Our booth was well received by everyone. We handed out over 2000 bottles of water (donations were optional and were gratefully accepted). We also hosted a guitar raffle (poster attached) which was a fabulous attraction for concert goers.
Our intent for this coming year is to host a guitar raffle yet again, but for this occasion we would love to raffle off 4 high-end electric guitars, as well as provide “Swag Bags” for festival-goers to purchase.
Planning for this year’s “Rock Out For Jack” is in its infancy stage, and we want to ask you if you would be interested in collaborating or partnering with Jack, by donating bulk items to help fill our Swag Bags.
I can offer you in return many forms of advertising that will reach several thousand people in the Ottawa area, which includes news media (newsprint, radio, and television), social media, direct email campaign, and posters, banners, flyers, ... I would also be more than happy to promote your business to festival attendees. Some ideas are promoting new or first-to-market items, advertise in-store specials, or provide bounce back coupons to everyone who visits our booth.
A local printing company located here in Kanata, AMBROTEK, has provided, and will continue to deliver, all the graphics, signage, tent canopy, banners, business cards... for all of Rock Out For Jack's fundraising/auction/festival needs since its inception, at absolutely no charge. AMBROTEK has extended their gracious offer for 2019 to include all businesses who are part of “Rock Out For Jack’s” network.www.ambrotek.com
We could design, print, and get thousands of bounce back coupons into the hands of local festival goers.
I have attached Jack’s fundraising letter and event flyer for your perusal.
If you have any questions, comments, or concerns please reach out to me at your convenience. I will be more than happy to answer.
With love – Greg Brown, Susan, Elizabeth & Jack
419 Montserrat Street
The following fundraising letter was composed by Jack’s sister, Elizabeth:
Rock Out For Jack Fundraiser & Silent Auction
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)
419 Montserrat Street
Stittsville ON K2S0L6
You can find us on Facebook: “Rock Out For Jack”https://www.facebook.com/Rock-Out-For-Jack-302178110388006/
Here is a brief clip of Jack, compliments of Campus Creative & Barterpay Ottawahttps://vimeo.com/281531283/80f6b381ce