Raising for Robbie
Organized by: Chrystal Curci
Chrystal Curci via Crowdrise
September 19, 2015
Hi everyone! Welcome to #RaisingForRobbie!!! My name is Robbie Curci and I am almost 6 years old. I just started kindergarten, and just like every other kid my age I like to play sports, ride my bike, go to the playground, and play baseball with my teammates. I am one of the happiest kids you could meet and I almost always have a smile on my face. But there is one thing that's different about me than other kids my age. I was born at only 31 weeks and was diagnosed with Periventricular Leukomalacia, which is a long term that means I have a bunch of cysts in my brain. Those cysts make it extremely difficult for my brain to tell my muscles what I want them to do, which means I also am diagnosed with Spastic Quadriplegic Cerebral Palsy. I just had major hip and pelvis surgery in May, and a year and a half ago I had muscle lengthening surgeries on my leg muscles at AI DuPont Children's Hospital. I have also had four rounds of Botox injections in my right arm and both legs at the Children's Hospital of Philadelphia. I go physical therapy, occupational therapy and speech therapy at school, and I also receive additional physical therapy outpatient two times a week at Children's Specialized Hospital, which I work extremely hard at. Everyone is hopeful that one day I will be able to walk with or without assistance, but for now, I use a special wheelchair that allows me to push both rims with only my left arm.
I am very motivated and determined to be as independent as possible, but as I get older and bigger, it is getting difficult for me to move around independently now that I’m in Kindergarten. I don’t want to let my CP hold me back, but I get tired and sore from pushing myself around. Currently, I rely on my parents and my personal aide at school to go any distances longer than a short hallway. I just don't have the strength or stamina to be able to push my chair long distances, over carpet, uphill, up ramps, or over room transitions. My doctors, therapists, parents, and teachers all agree that it's time for me to get an assist device for my wheelchair.
In May, while we were at the Abilities Expo I was able to meet the President of the company who invented the Smart Drive and was able to have one fitted for my wheelchair to try out while waiting, and I LOVE IT! It essentially turns my manual wheelchair into a power chair! It is a pretty small device that hooks on to the back of my wheelchair and there is a bracelet I wear with it. When I give my wheels a good push forward, it begins to push my chair, and continues to do so until I tap the bracelet on my rims, and it stops. To turn, I just turn my rims like I would without it. Here is a video the president made showing how it works. It's pretty simple, and the best part is...unlike the other power assist devices currently available, the Smart Drive is the only device which works with my one arm drive wheelchair! And even better, once I outgrow my current chair, it can be put on a new chair. It's the perfect solution to help me be able to move independently safely and effectively!
I did try out some power wheelchairs at the seating clinic and Abilities Expo but my therapists and parents agree that a full power wheelchair is not the best solution for me right now for a few reasons. First, we have no way to transport a power chair because we do not have a ramp van. Second, my insurance company Aetna says that if I get a power chair, I cannot then get a manual chair after. I would be stuck with a power chair. Third, power chairs are super heavy, and can be dangerous if I bump into someone or run over toes.... Say my sister Amber's or classmates for instance. And finally, when I did try them out, aside from running over my dad’s toes, I just sat there and pushed a button. I didn't have to work at anything, and mommy and daddy are concerned that I will lose my willingness and ambition to give the effort needed to walk one day.
This is why the Smart Drive is the perfect option for me. It's small and light enough that we can easily transport it in our current vehicles, it works with my specialized one arm chair, it gets billed as a power assist device and won't affect my ability to one day get a power chair if we decide I need to go that route in the future, and it's light enough that I won't break anyone's toes or shins with it accidentally.
As most of you know, our family doesn’t make a ton of money, and most of what my parents make, goes directly towards my MANY medical bills. What most of you don't know is that unfortunately my family has a high deductible insurance plan with Aetna, which restarts on October 1st, and that I do not qualify for Medicaid. Basically, this means that my mommy and daddy have to pay for my Smart Drive almost entirely out of pocket. And as with any medical equipment, it's super expensive.
With our insurance plan, my parents have to pay 100% of Aetna’s negotiated amount for the first $3000 of their health plan. Once they pay that, they’re responsible for 20% of everything else until an additional $5000 out of pocket is paid. After that point our insurance pays 100% of anything approved by the insurance. Basically, though my parents health insurance is better than having nothing, it’s not the best financially for someone like me.
On Tuesday, September 8th we went to the rehab technology department at Children's Specialized Hospital in Mountainside, NJ to meet with the PT and vendor to get all of the measurements and specifications needed and to order the Smart Drive. They told us that once Aetna receives the Letter of Medical Necessity that the seating clinic sent them, they have 30 days to respond with an approval or denial, then the Smart drive will be ordered and delivered. We are still waiting to find out from the seating clinic what Aenta's negotiated rate will be for it, but the MSRP of the device is $6,000, plus whatever National Seating and Mobility (NTSM) deems appropriate for them to make money involving the sale. NTSM is confident in their abilities to get me approved for the Smart Drive. However, my mommy and daddy cannot possibly come up with that much money in such a short time, so once it is delivered, if we cannot pay, it will stay there until we can afford to pay for it.
Mommy and daddy are swallowing their pride and asking for your help, to help me be able to get my Smart Drive and be able to get around more independently and safely. If you can, please donate and share my fundraiser with your friends and family. Any amount will help and no amount is too little. If you can't afford to donate, you can still help by sharing my fundraiser with your friends and family. If you have any questions please feel free to contact my mommy Chrystal Curci or daddy Rob Curci at any time. My family and I truly appreciate your efforts in helping us and are grateful to have such kind and loving friends and family! Thank you!!
Also, I understand we are asking a lot from you. Please know that any amount above the amount necessary amount for the Smart drive, will go directly to my surgery costs from May which have been rolling in each month since then. (Nearly $4000)