We need your help. We need funding for a private nurse for Charlie so that I can return to the workforce after nearly three years. We hope to raise enough money to pay the out-of-pocket expenses for Charlie's nurse for the three months or so we estimate that it will take me to find work and get those paychecks rolling in.
In 2012, I left a good job in city... Washington, D.C., to move my family to Philadelphia, PA. I became a stay-at-home dad with full-time care for Charlie, our special-needs little guy, and his way-cool big sister, Ryan. I consider myself one of the luckiest people in the world to have this opportunity. Even though it's been the hardest work in my life, I wouldn't trade a second of it. Meanwhile, mom, Danielle, worked two full-time jobs to pay the bills, buy food, make co-pays, etc.
But, as in any interesting life, things change and now it's time for me to return to the workforce. But we need help to get there.
As many Facebook friends and relatives know, our son, Charlie, developed Infantile Spasms in 2011, when he was eight months old. After more than a year of treatment, no drugs were working and he was on five at a time.
At age three, Charlie couldn't talk - no words, no phrases, not even pointing. He was unstable when walking, and, most importantly, was having 100s and 100s of subclinical and drop seizures daily. He was sweet and happy, but suffering and not getting any better.
We had to act decisively and fast. We visited Children's Hospital of Philadelphia (CHOP) and became a CHOP family. After about nine months, we moved to Philadelphia be closer to CHOP and to give Ryan a more stable life, a life that didn't involve driving 100 miles to CHOP twice a month, missing school, missing friends.
Thanks to CHOP, Charlie improved greatly. A new take on his Ketogenic diet, new medications, and on February 7, 2013, brain surgery to remove his right frontal lobe because it was malformed. That was followed by almost two years of intensive rehabilitative therapy. These things saved his life.
And thanks to moving to Philadelphia, Ryan has lots of friends. She's in Girl Scouts and attends a wonderful school.
Charlie attends Easter Seals school with other special kids five days a week, six hours a day. He is improving every day, but he still needs constant supervision when he comes home from school at 2:30 each day.
He still has seizures that could require rescue medication and is on several daily medications plus the Ketogenic diet. He is also on the Autism spectrum and is impulsive, and has no safety awareness.
Currently, our insurance pays for a Certified Nursing Assistant, which is very helpful but this person is forbidden to administer medication and cannot be left alone with Charlie.
Charlie requires specialized care 24/7. His mom, Danielle Boyce, and I provide the bulk of that care, but as Charlie improves, we've realized that there may be an opportunity for me to return to my career as a writer and editor. But we'll need help. Expensive help.
We need to hire a part-time nurse, but insurance does not cover this, so we need to pay out of pocket. If we hire a nurse, I will be able to return to work with confidence that Charlie is safe. And, by working, I can eventually pay for the nurse and contribute to covering the family's expenses.
Your generosity will help us help Charlie to keep growing and learning and continue being the awesome little miracle he is.
Everyday, Charlie is becoming a regular little boy who loves trucks, the playground, school and is always ready to say, "Hi," and "Bye," and shake hands or give a high-five. And he always has a hug for mom or dad or anyone who needs a good hug. And, if you get a hug from Charlie, it's a special thing. He's a great hugger.
Thanks very much for your consideration.
In 2012, I left a good job in city... Washington, D.C., to move my family to Philadelphia, PA. I became a stay-at-home dad with full-time care for Charlie, our special-needs little guy, and his way-cool big sister, Ryan. I consider myself one of the luckiest people in the world to have this opportunity. Even though it's been the hardest work in my life, I wouldn't trade a second of it. Meanwhile, mom, Danielle, worked two full-time jobs to pay the bills, buy food, make co-pays, etc.
But, as in any interesting life, things change and now it's time for me to return to the workforce. But we need help to get there.
As many Facebook friends and relatives know, our son, Charlie, developed Infantile Spasms in 2011, when he was eight months old. After more than a year of treatment, no drugs were working and he was on five at a time.
At age three, Charlie couldn't talk - no words, no phrases, not even pointing. He was unstable when walking, and, most importantly, was having 100s and 100s of subclinical and drop seizures daily. He was sweet and happy, but suffering and not getting any better.
We had to act decisively and fast. We visited Children's Hospital of Philadelphia (CHOP) and became a CHOP family. After about nine months, we moved to Philadelphia be closer to CHOP and to give Ryan a more stable life, a life that didn't involve driving 100 miles to CHOP twice a month, missing school, missing friends.
Thanks to CHOP, Charlie improved greatly. A new take on his Ketogenic diet, new medications, and on February 7, 2013, brain surgery to remove his right frontal lobe because it was malformed. That was followed by almost two years of intensive rehabilitative therapy. These things saved his life.
And thanks to moving to Philadelphia, Ryan has lots of friends. She's in Girl Scouts and attends a wonderful school.
Charlie attends Easter Seals school with other special kids five days a week, six hours a day. He is improving every day, but he still needs constant supervision when he comes home from school at 2:30 each day.
He still has seizures that could require rescue medication and is on several daily medications plus the Ketogenic diet. He is also on the Autism spectrum and is impulsive, and has no safety awareness.
Currently, our insurance pays for a Certified Nursing Assistant, which is very helpful but this person is forbidden to administer medication and cannot be left alone with Charlie.
Charlie requires specialized care 24/7. His mom, Danielle Boyce, and I provide the bulk of that care, but as Charlie improves, we've realized that there may be an opportunity for me to return to my career as a writer and editor. But we'll need help. Expensive help.
We need to hire a part-time nurse, but insurance does not cover this, so we need to pay out of pocket. If we hire a nurse, I will be able to return to work with confidence that Charlie is safe. And, by working, I can eventually pay for the nurse and contribute to covering the family's expenses.
Your generosity will help us help Charlie to keep growing and learning and continue being the awesome little miracle he is.
Everyday, Charlie is becoming a regular little boy who loves trucks, the playground, school and is always ready to say, "Hi," and "Bye," and shake hands or give a high-five. And he always has a hug for mom or dad or anyone who needs a good hug. And, if you get a hug from Charlie, it's a special thing. He's a great hugger.
Thanks very much for your consideration.