Rock Out 4 Jack Party and; Silent Auction/Guitar Raffle Finale

Stittsville, ON ~ 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. And his dad is battling guarded, high-risk cancer. The family is without private insurance; the costs of little Jack’s life sustaining medical supplies alone (tracheostomy & enteral feeding) are astronomical.

Jack is a young Stittsville 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-with vision impairment. He has had 20 surgeries to date (#21 coming soon). Jack has had numerous admissions to CHEO totaling over 2 years, and he also requires 24-hour nursing care. Jack was subsequently diagnosed with severe autism and continues to battle epilepsy…at one point over 100 visible seizures daily were common.

Our fundraising endeavour, ROCK OUT 4 JACK Party & Silent Auction/Guitar Raffle Finale, will take place on Saturday September 26th, 2020, at Yuk Yuk’s Comedy Club on Elgin Street here in Ottawa.
https://www.facebook.com/events/550961889082499/

Jack’s Silent Auction is hosted by his “Rock Out For Jack” page.
All donors will be gratefully acknowledged on this public event, and a link to social channels and website and website will also be incorporated.
https://www.facebook.com/rockoutforjack/

(We would be honoured if you were to follow Jack’s journey with us, by liking his page.)

We would be ever so thankful if you were able to kindly support our family, with a
gift-in-kind donation for our silent auction.

You are our hope, by rallying around Jack and his quality of life. We are grateful to every thoughtful donor that chooses to contribute to his baby steps and mini miracles. We would be very appreciative if you are able to kindly share Jack’s journey with your family, friends, colleagues, and clients, alongside social media channels such as Facebook, Instagram, WhatsApp, and Twitter.

You can learn more about Jack’s journey on our newly launched website:
www.rockout4jack.org

We also have a GoFundMe link available:
www.gofundme.com/jackbrown

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
Stittsville ON
K2S 0L6
613-808-2169
gregorybrown@live.ca
greg@RockOut4Jack.org

The following fundraising letter was composed by Jack’s sister, Elizabeth:

Rock Out For Jack Fundraiser
& Silent Auction
Dear Friends,

I am writing to you on behalf of my 10-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 March 28th for his 20th 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 during 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.

Recently 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 Jack’s silent auction.

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
613-808-2169
Elizabeth.brown1@hotmail.com
gregorybrown@live.ca
Greg@RockOut4Jack.org

You can find us on Facebook: “Rock Out For Jack”
https://www.facebook.com/rockoutforjack/
You can find Jack’s silent auction event “Rock Out 4 Jack Party & Silent Auction/Guitar Raffle Finale” on Facebook:
https://www.facebook.com/events/407887659871400/
Jack’s newly launched website:
www.rockout4jack.org
GoFundMe link for Jack:
www.gofundme.com/jackbrown

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