In my work as Daniel's advocate, and often time... fundraiser/resource helper... or survivalist...whatever that title is...
We have been blessed over the years with help, both financially and supportive from so many people..
The Scotty Fund - An incredible gift to this community...and the help they give to families with disabled or chronically ill children.
The Win Win Foundation - No longer in existence, but a strong part of our past through all of the friends we made there...and the respite nursing they provided allowed us, back then, to have a break and enjoy a night out once in a while.. among other financial help... But the people we met there continue to be our friends to this day.
The Molly Ann Tango Foundation - Another amazing foundation that has helped us with Daniel's needs, and even support for Mom's at an annual Mother's day luncheon fundraiser...
Save a Kid Foundation - An organization that reached out and helped us significantly with Daniel's renovations and needs. They are also helping us presently to acquire a special needs Trike/bike for Daniel.
Make A wish Foundation - in 2004 they granted a wish for Daniel and purchased a swing and playscape for Daniel to be able to swing and be around his siblings as they play.
Dream Come True Connecticut - In 2010 we were granted a wish to take Daniel to swim with Dolphins...it was the trip of a life time.
There are people in this world who genuinely care...who know how hard the struggle is....and want to support families like ours. Private and public people who have just met us and wanted to help. I can't say thank you enough in this life time.....
But the journey continues....and I am working so very hard to pay bills and keep the house and get wood for the winter and the very basics of life. I want a job too... but everytime I try I am rejected because I've been a "Stay home Mom" if you would call it that. ANY HOW.... advocating for a severely disabled child... A FULL TIME JOB people Totally.
The end of the year is always the hardest for us... there is never enough to do everything that everyone needs so we cut back, and cut back, and cut back... I keep praying that by some miracle I will come across a grant or a foundation that will help us. Social Security Disability? nope...they reject us. I just need help, and I ask God every day if its wrong or right to do so....but then I look at Daniel and he looks at me. It is, for now, the way it has to be.
Peace All.
I am Julie, Daniel's Mom. Daniel has Polymicrogyria. His brain is deformed, caused by a virus in utero. He has seizures, developmental delay, motor dysfunction, severe reflux, respiratory problems,etc He is unable to speak, eat by mouth, or walk. Visual strength and a gentle touch are his means of of communicating. Daniel has strengthened my belief in miracles and faith. Enjoy. Share. Follow. Help. Laugh, Pray, make a new friend.
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