Emily Grace Robinson
Emily Grace Robinson was born on November 16, 2009. She was a happy fun kid. She loved Barbies, Legos and the outdoors. She loved life and enjoyed every moment. She was also very compassionate. As she got older, especially after she was diagnosed with cancer, she cared so deeply about others and how they were. If you had a band-aid when she met you or were sad, the next time she saw you, no matter how long, she would ask you if you were better.
At the age of 4, Emily had complained of a back ache off and on for about 6 months. When her blood pressure went up and wouldn't come down, the Dr. ordered an x-ray. On June 29, 2014, the x-ray revealed a grapefruit size mass in her chest. After several days of scans and tests it was revealed that Emily had stage 4 high risk neuroblastoma cancer. She fought hard for 2 1/2 years. After multiple painful yet ineffective treatments and surgeries, on October 3, 2016 Emily passed away. She is survived by her parents Charlie and Myra, her sisters Autumn and Evelyn and her best friend Kennah Wilson.
Emily cared so much about others that she would not want any other kid to go through what she did. So we partnered with Alex's Lemonade Stand Foundation (ALSF).
"When ALSF's creator and founder Alexandra "Alex" Scott (who was diagnosed with childhood cancer just before her first birthday), was four, she told her parents she wanted to set up a front-yard lemonade stand. Her plan: to give the money to doctors to help them find a cure. Her first “Alex’s Lemonade Stand”, held with the help of her older brother Patrick, raised an astonishing $2,000 in one day. While bravely fighting her own cancer, Alex continued to set up lemonade stands every year. As news spread of the remarkable girl so dedicated to helping other sick children, people everywhere were inspired to start their own lemonade stands—donating the proceeds to her cause.
In 2004 when Alex passed away at the age of eight—her stand and inspiration had raised more than $1 million towards finding a cure for the disease that took her life. Alex’s Lemonade Stand Foundation was started by her parents in 2005 to continue the work that Alex began. Our mission is simple: to change the lives of children with cancer through funding impactful research, raising awareness, supporting families, and empowering everyone to help cure childhood cancer.
ALSF has grown into a Foundation that has raised over $150 million for childhood cancer and funded nearly 1,000 research projects that have saved the lives of kids fighting cancer with no treatment options left." (Taken from ALSF website)
At the age of 4, Emily had complained of a back ache off and on for about 6 months. When her blood pressure went up and wouldn't come down, the Dr. ordered an x-ray. On June 29, 2014, the x-ray revealed a grapefruit size mass in her chest. After several days of scans and tests it was revealed that Emily had stage 4 high risk neuroblastoma cancer. She fought hard for 2 1/2 years. After multiple painful yet ineffective treatments and surgeries, on October 3, 2016 Emily passed away. She is survived by her parents Charlie and Myra, her sisters Autumn and Evelyn and her best friend Kennah Wilson.
Emily cared so much about others that she would not want any other kid to go through what she did. So we partnered with Alex's Lemonade Stand Foundation (ALSF).
"When ALSF's creator and founder Alexandra "Alex" Scott (who was diagnosed with childhood cancer just before her first birthday), was four, she told her parents she wanted to set up a front-yard lemonade stand. Her plan: to give the money to doctors to help them find a cure. Her first “Alex’s Lemonade Stand”, held with the help of her older brother Patrick, raised an astonishing $2,000 in one day. While bravely fighting her own cancer, Alex continued to set up lemonade stands every year. As news spread of the remarkable girl so dedicated to helping other sick children, people everywhere were inspired to start their own lemonade stands—donating the proceeds to her cause.
In 2004 when Alex passed away at the age of eight—her stand and inspiration had raised more than $1 million towards finding a cure for the disease that took her life. Alex’s Lemonade Stand Foundation was started by her parents in 2005 to continue the work that Alex began. Our mission is simple: to change the lives of children with cancer through funding impactful research, raising awareness, supporting families, and empowering everyone to help cure childhood cancer.
ALSF has grown into a Foundation that has raised over $150 million for childhood cancer and funded nearly 1,000 research projects that have saved the lives of kids fighting cancer with no treatment options left." (Taken from ALSF website)
There are 8 common types of cancers only found in children. From those there are many more sub-types. ALL of those pediatric cancers together receive less than 4% of the national funding for cancer research. After Emily relapsed with her cancer (this means she went through treatment and was declared in remission with no evidence of disease but then subsequent scans revealed the cancer had returned) her chances of survival dropped to 5%. We sought out any option that would allow us as much time with her as possible. We found a trial out of Children's Hospital of Philadelphia. Emily was able to come home, attend school and take a pill twice a day for this trial. It worked! Emily reached remission once again. However, the drug did not continue to work and she relapsed again. In the mean time the Dr. that held the first trial drug was working on a 2nd tier drug that targeted a specific mutation that Emily had. We were hopeful that this could possibly be a cure for Emily. It was suppose to be released in the Fall of 2015, then the spring of 2016. Emily passed away before the drug could be released. We'll never know if this could have been her cure but it is now released due to a grant from ALSF. It was not released sooner due to lack of funding.
Let me say that another way... This 2nd tier trial drug could not be made available because there was NO MONEY and it might have been a cure for Emily. UPDATE: The trial drug is working. Kids with Emily's same mutation are surviving on this drug that doesn't make them sick, their hair doesn't fall out, they can live their lives normally. ALSF DID THAT!!
This is why I do what I do. Creating, planning and hosting fund raising events drains me emotionally which tires me physically. Yet I know Emily would say "Mom, don't give up. We must make a way for other kids to be cured so they don't have to do the icky medicine". Under the tab "Fundraising For A Cure" is where I will post my events. It is my hope that eventually events will be happening throughout the year from Lemonade Stands to Fun Runs to 5k's, and many many more events. The goal is to find a cure, A CURE!!!! for Neuroblastoma cancer in my life time. Will you help me?
Let me say that another way... This 2nd tier trial drug could not be made available because there was NO MONEY and it might have been a cure for Emily. UPDATE: The trial drug is working. Kids with Emily's same mutation are surviving on this drug that doesn't make them sick, their hair doesn't fall out, they can live their lives normally. ALSF DID THAT!!
This is why I do what I do. Creating, planning and hosting fund raising events drains me emotionally which tires me physically. Yet I know Emily would say "Mom, don't give up. We must make a way for other kids to be cured so they don't have to do the icky medicine". Under the tab "Fundraising For A Cure" is where I will post my events. It is my hope that eventually events will be happening throughout the year from Lemonade Stands to Fun Runs to 5k's, and many many more events. The goal is to find a cure, A CURE!!!! for Neuroblastoma cancer in my life time. Will you help me?