(Jack is hyped for his Rock Out for Jack Party. Photo: Brown family)
If you have not heard yet, a fundraising party is taking place for Jack Brown on September 28th. Jack is the young Stittsville boy who was born with CHARGE Syndrome. The party is taking place at the Lieutenant’s Pump British Pub on Elgin Street. This “Rock Out For Jack Party & Silent Auction/Guitar Raffle Finale” is one not to be missed and be supported by the residents of Stittsville.
CHARGE Syndrome is genetic and comes with an myriad of extensive medical and physical difficulties. In Jack’s case, he is tracheostomy dependent, has a feeding tube insertion and is deaf. He has had 19 surgeries to date (with number 20 coming soon). Jack has had numerous admissions to CHEO totaling over 2 years, and he also requires 24-hour nursing care.
(Jack seen here sharing his love with some seniors. Photo: Brown family)
Jack was born with several severe disabilities and life-limiting conditions that require around-the-clock nursing care and has just recently been diagnosed with severe autism. His Mom, Susan, is Jack’s primary nurse and hasn’t been able to work since Jack was born. “Susan was trained by the staff at CHEO to care for Jack and to use life-saving measures if necessary”, writes Elizabeth, Jack’s sister. His Dad, Greg, has his own battle as well – guarded, high-risk cancer – this has brought on a depression disorder that does not allow him to work. The family is without private insurance, but do receive some support from government affiliated agencies.
The costs of Jack’s life sustaining supplies alone (tracheostomy & enteral feeding) are astronomical at approximately $34,000 per year. Add to that, the incontinent supplies at another $5,400 that Jack requires. Many other medical costs needed to sustain Jack just add to the expenses that are incurred.
To support this family, over 200 items have been generously donated to date for the silent auction with more pouring in. Please support this Stittsville family – they would be “ever so grateful if you were able to kindly support our family with a gift-in-kind donation for our silent action”. Here is the link for any silent auction items you wish to donate: https://www.facebook.com/events/288898548416999/.
Jack also has a newly launched web site, put together by his Dad and the love of a good friend – www.rockout4jack.org/ and follow ‘a day in the life of Jack’. A GoFundMe page has also been developed to support Jack – www.gofundme.com/jackbrown.
Jack may have many limitations, but he refuses to let these take away his love, determination and zest for life.