Organized by: Michael Krupka
Michael Krupka via Crowdrise
January 31, 2015
EVENT DATE Nov 09, 2014
Our teams effort begins with the running of the Naperville Marathon on November 9th, 2014. Some members will run the whole race, some a half, but all are committed to having Charlie live life to its fullest.
In 2007, Charlie was born 4 months prematurely at only 24 weeks gestation. Termed a "micro-preemie," Charlie was one of the smallest babies at the Advocate Good Samaritan Neonatal Intensive Care Unit. He spent the next 97 days there unit fighting for his life. He weighed 1.6 oz at birth and his tiny body suffered some of the most severe medical issues including two massive and severe brain hemorrhages, collapsed lungs, and perforation of his intestines. For 4 months, we sat with him; watching him in an incubator struggling to survive. He was so tiny he could fit in the palm of our hands! He was critically fragile and we came very close to losing him a few times. So close that the chaplain came to give him a bedside blessing. Finally, after 4 agonizing months, we were able to bring Charlie home! We were THRILLED, our NICU journey was over, but a new journey was just beginning. Given his extreme prematurity and extensive medical complications, doctors warned us that Charlie's future was very uncertain: that we'd have to just "wait and see" how he would develop.
As parents, we were terrified and confused. Those first few months were quite a roller coaster. We were just so relieved that Charlie had survived so many medical complications in the NICU. Little did we know that the real roller coaster was just beginning. The first few months Charlie was home, we averaged about 8-10 appointments per week. Pulmonology, neurology, opthamology, cardiology--pretty much all of the "-ologists!" Add to that physical therapy, occupational therapy, and speech therapy--we were running everywhere!! But it was okay, we did whatever we could to give Charlie the best prognosis. We were cautiously optimistic that maybe he would just "outgrow" some of the complications resulting from his premature birth. But around Charlie’s first birthday, it became evident that he was missing some major milestones. He couldn't sit up, or crawl, had feeding/swallowing difficulties, and he avoided using his right arm. At 18 months, Charlie was officially diagnosed with spastic quadriplegic cerebral palsy.
Charlie's cerebral palsy causes "over firing" of his muscles when he sends a message from his brain to his body to move. This affects EVERYTHING!! Not just crawling or walking. It effects vision, swallowing, digestion, arm movement, dexterity, balance, even sleep! The spasticity causes an extraordinary amount of muscle tension which also wreaks havoc on bones and joints. Charlie eventually developed the ability to commando crawl, but standing and walking began to seem like an impossibility. When Charlie turned four years, we got news from his orthopedist that the spasticity and lack of mobility had caused severe deformity in Charlie's hips. Our poor little guy had to undergo an 8 hour surgery to cut and reshape his hips and femurs. IT WAS AWFUL, and for 8 weeks following the surgery he was in a body cast from his armpits to his toes. Once the cast was removed, grueling and painful physical therapy began and continued for the next 18 months. But still, standing and walking just didn't come. To allow Charlie the most independence and freedom, we finally made the decision to get him a power wheelchair. It seemed that despite his strong efforts, the spasticity was too severe too allow for functional walking. So Charlie began to navigate his world from his shiny red power chair. He did great with it and when he began kindergarten he was able to fully participate from his power chair.
Charlie was happy with his newfound mobility, but spasticity continued to cause pain, sleep disturbances and joint changes for him. We knew he couldn't continue like this, there just had to be a better solution. In 2012, Tracy began researching a surgery that was being done in St. Louis to reduce spasticity in children like Charlie. The procedure was called Selective Dorsal Rhizotomy (SDR), and the most world renowned surgeon to perform this surgery was in St. Louis. So off we went! Charlie was found to be a candidate for the surgery and underwent SDR on April 16, 2013. The surgery had enormous risks, but also offered the permanent reduction of spasticity in Charlie's legs. The surgery was a success. We returned to Chicago to begin the rigorous 5x/week therapy protocol and continued that for many months.
Charlie worked hard!!! Harder than any 6 year old should ever have to and it paid off. Soon he began standing and walking with the support of a walker. An absolute miracle for a boy who just a few months earlier was confined to a wheelchair!
His surgeon says his progress should continue over the next several years, as long as Charlie continues the recommended rigorous therapy to strengthen muscles that haven't been used for seven years. The surgeon's prognosis is that someday Charlie might walk with only the assistance of a cane. A dream come true for Charlie and our family!
Charlie is living a life we would've never expected and now we know the sky is the limit. He is an absolute miracle and we are truly honored to be his parents! He's an inspiration to all who meet him. Through all of his adversity, he is a smart and very happy seven year old boy who brings a smile to everyone who crosses his path. He's given us so much joy and taught us a great deal along the way. It's been quite a journey over the past seven years and we firmly believe that Charlie would not have been able to make these amazing strides and achieve what he has without the support, motivation, and love from our friends and family near and far! We will forever be grateful to the entire team at Good Samaritan hospital’s NICU, all of our doctors in Chicagoland, our therapy team at Easter Seals DuPage & Fox Valley, Dr. Park, and the team at St. Louis Children's Hospital, our family, and all of our friends. You continually pick us up when we are down, and help our Charlie live his best life!! Thank you!
We have gathered strength from you to get to this point. But now, we need to provide Charlie more than just strength. We need to provide him with financial support.
You all have seen how Charlie can succeed when given the opportunity to work at his goals. Unfortunately, the recent drastic changes in our health insurance plan do not provide nearly what is needed for Charlie's continues progress. We are setting up this fund raising effort to allow Charlie the chance to achieve what only his spirit can.
We may be working to raise funds for Charlie for most of his life. It is impossible for us to know where he or we will be 5 years from now, 10 years from now, but we are planning for the future. For the immediate future, we know this: Charlie needs so many things in the coming 12 months that we are not able to afford to give him:
More therapy, then more therapy:
Insurance has now limited Charlie’s therapy visits to 20 for one year. The prescribed number of visits that Charlie’s doctors recommend is 200 PT and OT visits for one year. The out of pocket cost for the prescribed therapy beyond what our copay and deductible covers, is $12,800.
There is a wonderful physical trainer, who specializes in working with Children who have cerebral palsy that have had the SDR procedure. His name is Mike Poole. Mike’s practice is in England. He treats children from all over the world. Tracy and I, as well as a number of other parents, have asked Mike to come to Chicago and provide a clinic for our children. He has agreed and will be conducting his clinic this coming March. The cost for this two week intensive clinic is $2,500.
Charlie loves riding his adaptive bike! Every day, when Charlie gets home from school, Charlie takes Tracy on a “Time Trial." Each and every day Charlie pedals faster and faster in an effort to beat the time he had the day before. His adaptive bicycle is very important, not only does he love it, but it helps his muscles and bones to continue to develop and grow naturally.
Unfortunately, we are getting to the point where Charlie has outgrown his trusty bike. We will need to replace it soon. A used adaptive bike is somewhere in the vicinity of $2500.
A Special Needs Trust:
From now on, we will be placing a percentage of our income into a special needs trust. This trust will provide Charlie funds that will allow him to live his life beyond ours. It will help provide him the medical care he needs, his own residence, clothes on his back and food in his fridge. It will be there to help him live his best life.
The upcoming Naperville marathon is the first of many efforts to help meet Charlie’s needs. Please help support our team, Champion Charlie.