29 Thursday Mar 2012
Posted in Uncategorized
We just want everyone to know that Kevin will be spending an extra night or two at Jersey Shore Medical. Kevin’s doctors would like to keep him under observation just a little bit longer to make sure there are no significant complications from the surgery.
At present we are not sure if he will be home Saturday or Sunday. As soon as we have a better sense of when he will be discharged we will make sure everyone knows.
Thanks to everyone for your thoughts and prayers!
27 Tuesday Mar 2012
Posted in Uncategorized
We have a quick note about Kevin’s surgery, which went really well. The goal of the surgery was to set Kevin up for a device that can stimulate his diaphragm so he can breathe without the assistance of a ventilator, at least for some portion of the day. Kevin was in and out more quickly than anticipated – which was for a good reason. Initially, the surgeons believed that they would need to graft nerves from Kevin’s shoulder or leg for the device to work. During the surgery, however, they found some scarring that had been inhibiting the responsiveness of the nerve that controls the diaphragm. The doctors discovered that the nerve was more responsive than previously thought, which meant that they did not need to graft any additional nerves.
This is good news because it increases the chances that this device will work for Kevin. We still do not know yet whether it will work or how much it will reduce his dependence on the ventilator, but today’s surgery was very encouraging and an important first step.
Kevin was really happy to hear the news and he was, of course, tremendously grateful to the staff at Jersey Shore Medical Center for taking good care of him.
In a few weeks, he will start working with the device to see if it will work. We are optimistic, as always. We will keep you posted on his progress!
The plan is for Kevin to be home from the hospital on Thursday, but we are still not sure when he will be ready for visitors. We will try to keep everyone posted. In the meantime, please call ahead if you’re planning to visit.
Thanks again for everyone’s prayers and support!
24 Saturday Mar 2012
Posted in Uncategorized
Kevin’s surgery
Before we get to the fundraising efforts, we have some good news to share about the surgery we mentioned in the last update.
We were very relieved to learn recently that Kevin’s surgery that might get him breathing on his own again will be covered by insurance. Since the surgery will be very expensive, this coverage takes enormous financial pressure off our family and will allow Kevin to use the funds generated for the Kevin Neary Trust for his care, living space, and other needs. We were committed to finding a way to make it work either way, but this was very welcome news.
Kevin’s surgery is scheduled for Tuesday, March 27th. We are hopeful that this surgery will be successful and will help get Kevin off the ventilator at least part of the day. We appreciate your keeping Kevin in your thoughts and prayers.
Note on visiting: Kevin will leave for the hospital on Monday morning, so he won’t be around for visitors next week. Assuming everything goes well, he is scheduled to be back home on Thursday, but we don’t know when he’ll be ready for visitors. Please call ahead if you plan to visit on Thursday or Friday.
Kevin’s excited about the surgery and has been keeping busy. He’s had plenty of visitors and has gotten out and about, including making his big public debut at the March 16th event.
The fundraising continues…
We continue to be amazed at the generosity and spirit of everyone who has come together to help raise funds for Kevin’s needs. On March 16th, over 500 people came out to Upper Chichester’s Rec Center to raise over $35,000 for Kevin! It was an incredible gathering, and it was a thrill for Kevin to be greeted by hundreds of friends and family cheering him on. We are so grateful to everyone who helped put it together, especially Joan Morrison, and for the generosity of the Chichester community.
The folks from Weld Photography volunteered their time and took a bunch of great photos from the event. Check out the photos here. Weld Photography is donating 60% of proceeds from photo sales to the Kevin Neary Trust, so don’t be shy about ordering!
Kevin stayed out until midnight and really enjoyed seeing everyone. He was also thrilled to see his new friend Adam Taliaferro, who was told he would never walk again following an injury he sustained as a freshman football player at Penn Stat during his freshman year playing football for Penn State. Kevin was the lucky winner of not one but TWO raffle items – a Julius Irving jersey and tickets to a Sixers game.
How you’re helping and why we’re so grateful
So far, with all of your help, we have raised over $135,000 for the Kevin Neary Trust! We have been blown away by the support so far, and we wanted to give everyone a sense how their contributions have helped Kevin and will continue to help him.
On average, care for people with Kevin’s kind of spinal cord injury costs roughly $800,000 in the first year. While insurance covers much of these costs, there are many items that are not covered. Over the past few months, we have utilized the Kevin Neary Trust to make several purchases that will help Kevin stay healthy and have the best opportunity to make the most of his situation – which we know he will.
Here are the highlights:
As many of you saw with Kevin’s big entrance at the March 16th event, we purchased a van! With the help of Kevin’s friend Melissa, we were able to find an affordable option that works like a charm. On the day of the event, Kevin got to the mall and bought his first new clothes in months. Without that van, Kevin wouldn’t have been able to make it to the event and would have a much harder time getting to doctor’s appointments. It’s really great that Kevin can get around on his own schedule.
The van ran about $5,500.
The shower trolley cost about $6,000.
We’ve also procured a generator, which we needed for backup power for Kevin’s ventilator in case the power goes out for a long period of time. The generator ran about $10,000.
Over the next several months, we will be going forward with our plans to put on an addition. While many services have been or will be donated, the addition will be our most expensive item and will be critical for Kevin’s future. As the addition develops, we’ll keep you posted.
We’ve also had medical equipment donated, which has been really helpful. Recently, a local company, Neighbor Care, donated a mattress that will significantly help Kevin. (Quadriplegics can develop pressure sores that can turn into nasty infections, so it is critical that Kevin has top-notch equipment to avoid them.) We’re grateful for local businesses like Neighbor Care and others for pitching in.
We couldn’t have gotten all of this done without all of your tremendous support. We are so immensely grateful for everyone’s efforts to help us raise funds and help Kevin. Please know that Kevin, Joe, JP, and Chris appreciate every donation, raffle item, phone call, or other ways you have helped.
Upcoming Events!
Kevin’s friends and family are keeping the train rolling with more events in support of Kevin!
Union Trust Event
We’re very excited for the May 6th event at Union Trust Steakhouse. Kevin was working at Union Trust before the shooting, and we are really grateful for Union Trust offering to host this event. It will be the first event in the city that Kevin will be able to attend, and Kevin’s friends Melissa and Erin have been working hard with Union Trust to make it great.
Tickets are available at the Neary house, online (http://ut4fokn.eventbrite.com/), or by contacting Sarah at Union Trust (sarah@uniontruststeakhouse.com or 215-325-6000) or Melissa Magness (melissamagness@gmail.com).
Salesianum Event
On April 22, Salesianum School, which all three Neary boys attended, is hosting a 3-on-3 basketball tournament to benefit the Kevin Neary Trust at Talley Day Park in Wilmington. Organized by the students, the event will feature a 64 team tournament, food, entertainment and a mass to conclude the day. We hope that you will be able to make it out for the festivities. More details will follow. If you are interested please contact Joe Neary at nearyjp@gmail.com.
At all of these events, the new baby blue FOKN shirts will be available for purchase! They are quite styling (Kevin approved the design).
We’ll have an update after Kevin’s surgery next week. Stay tuned!
07 Wednesday Mar 2012
Posted in Uncategorized
It’s been a long time since we’ve updated. Our family has been busy with the transition home. We will do our best to provide updates more frequently! We have a fair amount of updates on Kevin, his condition, what we’ve been up to, and some announcements about upcoming events.
How’s Kevin doing?
Kevin is doing pretty well. While we have encountered some challenges with his transition home, Kevin is healthy, stays busy, and continues to have a positive attitude. Most of all, Kevin is also grateful for all of the support that everyone has shown him and appreciates having people come hang out and talk for a bit. While Kev misses all of his people at Magee and the many Philadelphia visitors (he was quite popular there!), he has had a steady stream of visitors at home. If you ever feel the urge to stop by, feel free to come. He is generally ready for visitors from the early afternoon on.
Possible Surgery
The most important update on Kevin’s condition is that he is currently scheduled to have surgery to try to restore functionality to his phrenic nerve, which controls the diaphragm. Because Kevin has limited diaphragm function, he currently needs the ventilator to do the breathing for him. The problem with the ventilator is that it’s a big impediment to getting around and can lead to health complications. That’s why the phrenic nerve surgery is our focus right now — if successful, it would enable Kevin to breathe without the ventilator for some portion of the day.
Right now, we don’t know whether the surgery will be covered by insurance and we do not know exactly what the cost will be. We are hopeful that the surgery will be covered; over the long term, this surgery has the potential to add years to Kevin’s lifespan and give him a significantly better quality of life.
The surgery is currently scheduled for March 30th, but that may change. We will update the website with any pertinent updates.
What else have we been up to?
Friends and family have been busy getting a few items that Kevin will need going forward. In large part, these are not expenses that are covered by insurance, so this is where the tremendous fundraising efforts have had a big impact.
First, we are on the verge of purchasing a van that will enable Kevin to get out and about. He has been at home since he left Magee; once we have a van, he will be able to be the man about town he has always been. We’re hoping we’ll be able to make it to the Phillies’ Opening Day as a family – for the Nearys, this is akin to a federal holiday.
Next, we are working with an architect on potential designs for the addition to the house that will provide Kevin with his own bedroom and, at his request, an office so that he can get back to work. The addition will be custom tailored to Kevin’s needs, so it will significantly improve his independence and quality of life. We’re also hoping to make it more visitor-friendly. (Side note: We appreciate everyone bearing with us as we get used to having more visitors.)
We’ve also made several changes to the house and purchased a number of items that are essential for Kevin’s care and are helping him get back into the same routine he had at Magee.
We are tremendously grateful for everyone’s help, whether financial, logistical, or otherwise. They have made the transition so much easier for Kevin, and we don’t know what we’d do without it.
Events!
Many of you have asked for event updates, including how to purchase tickets for the Union Trust event. We have some updates below and on the events tab. If you have event ideas or would like to help, please contact JP. We will get details up on the Events tab for other events as they come together — thanks for your patience!
March 9th – Derwood, MD Knights of Columbus event
Kevin’s Uncle Chris Kelly and Aunt Denise Neary have put together a Family Night with Knights of Columbus Council #2323. The event will take place in Derwood, MD from 6:30 – 10 p.m. Please see the events tab above for details on the event and how to RSVP if you live in the area.
March 16th – Night for Neary
We’re all set for next Friday night’s event! Unfortunately, ticket sales are not available online, so please contact Sean Swayngim if you would like to buy tickets in advance – 610-864-3497 or email: Swayngim147@msn.com
May 6th – Union Trust Benefit
Big news – tickets are now on sale for the Union Trust brunch event! The fine people at Union Trust, where Kevin had been working recently, have teamed together with some of Kevin’s dear friends to host and organize this fundraiser. It should be a really fun event with a hearty brunch and exciting auction items, so get the tickets while you can! Tickets are $125 (including tax and gratuity) and the proceeds from the event will go to Kevin.
To buy tickets, please contact Sarah at Union Trust (sarah@uniontruststeakhouse.com or 215-325-6000) or Melissa Magness (melissamagness@gmail.com).
The brunch will be a buffet style and, most importantly, delicious (Kevin wouldn’t have it any other way.) If anyone plans to do the Broad Street Run that morning, we’ll be able to accommodate a slightly later meal since it will be a buffet.
For more information, check out the events tab and the flyer on the FOKN facebook page. https://www.facebook.com/photo.php?fbid=929077958495&set=o.363971043613402&type=1&theater
