Over the last ten years, I have been very involved with advocating for children and adults with disabilities in a variety of ways in the State of Georgia. My sons, Jacob and Jared, are the inspiration for all that I do. Jacob has been able to overcome more in his brief 14 years in this world, than most of us have in a lifetime. Jacob is truly a miracle baby. I was diagnosed at 18 weeks of pregnancy that Jacob had excess water on the brain, a severe heart defect, Down syndrome and possibly would not live to full term. Thanks to a lot of prayers and faith, Jacob was born on January 9, 2000. Jacob has had 100 surgeries and procedures including heart, ENT, GI, eye, etc but this has not slowed him down. Due to hard work of many people on the “Jacob team”, Jacob is now talking, loves to read, play the piano, bells and xylophone, yoga, and participate in baseball for the Alpharetta Braves team, his favorite sport. Jacob’s hope and dream is that society will see him for his abilities and not disabilities, as he continues to amaze everyone that he encounters in the world (transcribed by Mommy and Daddy). Early intervention services does pay off for our children. Jacob is living proof that therapy works!
On 11/13/09, our life changed forever! Jacob was diagnosed with Leukemia (blood cancer). For over 3.5 years, he went through intensive daily/monthly chemotherapy, monthly spinal taps and many hospitals admissions. On 1/20/13 Jacob completed chemotherapy but continues to be monitored at AFLAC Cancer Center in Atlanta for another 5 years. He will be considered “cured” of cancer at the age of 18 yrs old. This opened my eyes up to another advocacy opportunity – the need for more funding for childhood cancer research.
I joke that Jared is being groomed to be the next Governor of Georgia. Jared has attended many rallies and events at the Capitol and has even met with the Governor and various legislators as well. Jared keeps us on our toes with his questions and commentary in everything he does! Jared loves watching and playing football, learning about animals and playing with his brother. Jared is one of Jacob’s #1 advocate in making sure others understand and accept his brother for his abilities and not focusing on his disabilities!
Due to all of my involvement with advocating for children and adults with disabilities over the years & navigating the system in order for Jacob to receive the best services possible, it became clear that families still need more help and information in maximizing their children’s potential. I have personally “walked the walk” and understand how we as parents need to advocate for our children in order for them to receive the necessary services needed to maximize their potential. This is why I developed this website and use social media to “pay it forward”…….
If you have not already done so, please sign up to be on my advocacy distribution list. My goal is simple. Make the issues easy to understand and explain to advocates what they can do to influence change, as well as, be empowered by overall disability and childhood cancer research information. My list has over 2,500+ members to date and continues to grow. Also- follow me on Twitter and Face Book at UniteOurVoices. Please get involved….. YOUR child depends on YOU.
United…We Will Make a Difference!
Heidi J. Moore