Some of you know that our son, Michael was born with TAR Syndrome (Thrombocytopenia absent radius). TAR Syndrome is characterized by a platelet disorder and an absence of the radius (arm bone). Michael has no upper extremity bones and has hands in the shoulder areas. For Michael this means that both hands are short extensions near his shoulder joints. His legs are affected as well. He has no knees/patella.
Michael is a caring, loving, funny, charming, and a social 12 year old. He loves playing on the Xbox, and playing soccer and football on the floor with his younger brother. He loves the Bruins, Patriots, and the New England Revolution soccer team. He enjoys hanging out with his friends and collecting football cards.
For the past eight years, Michael has been undergoing numerous surgical procedures by the world renowned Dr. Dror Paley who specializes in limb lengthening and deformities to help to straighten his legs so that he can walk. However he will still need to use a wheelchair for mobility throughout his life. He gets physical therapy twice a week to help him stand and walk on his own. He still prefers to roll on the floor to get around faster. He has a power wheelchair that he uses for school.
As you can imagine, there are many expenses related to Michael’s condition that are not covered by insurance and must be paid out of pocket. So of these are co-pays, deductibles, our numerous ongoing trips back and forth to The Paley Institute in Florida and our relocation expenses while we are there. This is putting our family up against a challenge we no longer can meet alone and need your help.
To help with the financial burden of Michael’s uninsured expenses, a fundraising campaign in his honor has been established with HelpHOPELive, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax deductible, are held by HelpHOPELive in the Northeast Catastrophic Illness Fund, and are administered by HelpHOPELive for illness-related expenses only. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.
Michael has always wanted to be treated just like everybody else, and never feel different. He will always have some struggles and challenges, but he always gets through them. We are so very proud of the young man that he has turned out to be.
On behalf of Michael and our family, thank you in advance for your kindness, generosity, support and prayers.
Misty and John Perrino
June 21, 2016
Michael had another leg surgery on June 8, 2016 to take out the metal plates in his legs. By June 10th he was off all pain medications and was asking if his friend Thomas could sleep over. I told him I think it is a little too soon and possibly next week. And by the fourth day after surgery he was rolling around on the floor to get around. Doctors orders was no standing or walking for 2 weeks. He is really starting to feel back to himself again. He actually went swimming yesterday and had such a great time. I am so glad he is feeling better and back to his happy self.
May 24, 2016
I can’t tell you what a gift it was to be co- chair of The first annual fundraiser kick off party. Thank you so much coming out and having a fun time. The Perrino Family has warmed many hearts . Although the party is over the fundraising continues.
May 21, 2016
Last few hours to get tickets online price goes up at event! Remember we have a donor waiting to give us up to the first 15,000 so bring your checkbooks,credit card and bid on some great silent auction items
May 20, 2016
The Excitement is building!!!Tomorrow night is the big night in the making for months . You can still get tickets online until tonight and save money and avoid line. We will have a prepaid check line.
Great silent auction and raffle items . Must be there for drawings at 7pm. See you there and thanks for your kindness.
May 19, 2016
To purchase your tickets in advance you must go online for Saturday’s Ain’t No Stopping Us Now Party. Online ticket sales will close at 11:59PM on Friday May 20th. Tickets will be available at the door.
May 18, 2016
Raffle Items added: Red Robin, Trading Post Lounge, Vel’s Restaurant, Baking Party Basket, Picture Frames
and for silent auction a round of golf for four at Sandwich Hollow and a beautiful American Flag Afghan. Remember ticket prices increase day of the event at door, so get your tickets online now.
May 17, 2016
More silent Auction items added a 3 hour sunset cruise out of Falmouth Harbor and a pair of Tiffany Silver Earrings. Also there will be Moonwalk a Police and Firetruck as well as face painting for the kids and thanks to those who have already purchased tickets on line.
May 14, 2016
We are 1 week away from a fantastic night!! Current Silent Auction items include: Trip on private oyster boat to a working oyster farm, golf for four with cart at Willowbend, golf for four at Little Harbor Country Club, 7 days at a condo with private beach in Point Loma Beach Minutes from San Diego Bay, Mary Kay Baskets, BlueTooth Star Wars Speaker, trip on private boat to oyster farm, 3 month membership to Ymca, Wholefoods gift card, gift card to Uptown Dog in Falmouth, Tickets to Revolution Game, Diamond Necklace, Private Plane ride over Cape Cod, his/her College Baskets, and over 70 raffle items. Come have some fun! Tickets online to avoid line at door.
May 12, 2016
New silent Auction items listed today!!! A 7 day stay at private condo with private beach in San Diego. Also A generous donor has offered to match any donations up to $15,000 so whatever donation you make is really double. Remember tickets on line
May 11, 2016
Just in a day of golf for 4 with cart at Willowbend. Also we just added that you can also purchase food tickets on line while supplies last. Let’s raise that yellow bar!! Last day for corporate sponsorships to be included on event signage is Friday May 13th . WE will still take sponsorships after date and you will be mentioned at event.
May 11, 2016
Do you have your tickets yet??? Only 10 more days until this awesome South Shore event happens. Get them online today. We would also like to thank our latest corporate sponsors: at the gold level: Sunshine Farm Sanctuary and at Silver : Island Creek Oysters Bronze: Whole Foods
May 6, 2016
More exciting Raffle items added. Get your tickets online in advance to avoid lines at check in .
May 3, 2016
Mikey, remarkable boy growing into a young man, growing excitement counting the days and weeks until the party, with an encore of 6th grade graduation! Along with classmates Mikey shares excitement, worry, hope, anticipation of 7th grade at the Middle School. Whole lot of changes to celebrate!
Sean Withington (Mr. W) and Keiki
April 26, 2016
Just added for silent auction: Enjoy the great weather on the green at Little Harbor Country Club, Wareham :Good for one foursome with cart and box of titleist balls. Makes a great Father’s Day Gift!!! Also just added a 3 month membership at Old Colony Ymca Plymouth just in time for the summer. We would also like to thank our current Corporate Sponsors
Visual Vitality Consulting Inc., Vicki Lee’s Cafe/Catering of Belmont,Ichabod and Clark’s Oysters, La Novita Salon and Spa,Dino’s Pizza, Pilgrim Aviation,The Old Colony YMCA and Little Harbor Country Club,Wareham.
April 21, 2016
Where will you be 1 month from today? I know where I will be : at the AIN’T NO STOPPING US NOW fundraiser. Tickets available on line .
April 13, 2016
Excitement continues to build and folks are counting down the days until Ain’t No Stopping Us Now Fundraiser. Also a chance to celebrate all the 2016 Graduates. Michael will be graduating 6th grade and having a birthday. Lots to celebrate . He is a strong boy who is undergoing yet another surgery this week in Florida where he needs to get is major medical care.
We have more great silent auction and raffle items : his and her off to college baskets,and dry cleaning certificate.Get your tickets on line or consideration a donation. Thank you
April 10, 2016
It was great hearing from Michael’s principle on Friday. She called to wish us a safe trip. That was very kind of her. We had a crazy morning today. The alarm woke us up at 2:30am and I woke up and started getting ready. At 2:45am I heard snoring and my husband fell back to sleep. We all luckily left the house at 3:15am to caught the plane. We made it to Florida safety. Michael wanted KFC for lunch and he enjoyed it. Just unpacking and relaxing in the hotel tonight.
April 1, 2016
Thank you to WHDH TV and Boston’s own Joe Stapleton for Being our MC for the Night. Joe also be seen in Academy Award winner movie SPOTLIGHT. Also just added : Silent Auction Item; Join Captain Sean Withington on his boat and see the workings of a running oyster farm.
March 29, 2016
Get your tickets: more raffle items listed Jewelry,Juicy Couture for your dog, Boston K cup Coffees,Star Wars and Frozen Treasure boxes, Sports Basket, beach bag ,college basket, board games , picture frames , The Green Light Duxbury,Cottons in Duxbury and the French Memories Bakery Duxbury and more keep up to date on this site
March 26, 2016
Michael is getting very excited about the fundraiser. He posted flyers on the walls around his school about the fundraiser. Donations are coming which includes ice cream gift card, restaurant gift card, and beauty gift baskets. I would like to thank my friends Kristin Myers and Kerri Wike Donating.
March 17, 2016
Save the date: May 21st 4-8pm Weary’s Travelers Club Bourne Ma LIVE MUSIC ,DJ DANCING FACE PAINTING AND FUN
Silent Auction and Raffle
Registration now open You could win a private flight over Cape Cod !!! and more Sign up Family friendly event if you can’t make it consider a donation
March 16, 2016
It”s starting to get exciting for Michael watching the bar rise. Thank you to those of you that have contributed so far. Your kindness is truly appreciated .No amount is too small or too large. Michael will be having surgery again in a few weeks out of state where his specialist is and I’m sure he will have a smile on his face watching the yellow bar while he is recuperating. Stay tuned for upcoming event notice.
February 20, 2016
Welcome to Michael’s Ain’t No Stopping Us Now Page
We are in the groove and can’t wait for you to join the fun! Yes this is a catastrophic Illness fundraising page but with a flare and any amount is tax deductible. Follow us on Facebook Linked In and Twitter. Please share this page with co workers friends and family and anyone else who wants to HELP HOPE LIVE and get to know about an amazing boy and his illness of Thrombocytopenia Radius. Thrombocytopenia -absent radius (TAR)syndrome is a rare disorder that is present at birth. Low platelet counts requiring transfusion and absence of forearm bones and short stature are hallmarks of this disorder . It can also affect the heart and kidney. Thank you for your kindness and generosity. Stay tuned to this site for updated information and events that you can attend .
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In honor of Michael Perrino
Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Radnor, PA 19087