Tag Archives: Sista Felicia Out an About
A Childhood and family friend of Joey and I needs your help…
Tony & Debbie Frontiero write:
Dear friends and family and new friends we haven’t yet met.
On September 22, 2014, our daughter Julianna was diagnosed with a progressive degeneration disease called Friedreich’s Ataxia (Also known as FA, FRDA and the sister disease to ALS). I’m sure most of you are saying, What’s Friedreich’s Ataxia? So did we.
FA is a very rare debilitating, life-shortening, degenerative neuro-muscular disorder. Currently only 20,000 people in the entire world have been diagnosed with FA. FA is progressive and will affect more and more parts of Julianna’s body over time. It’s affected her balance, so she can’t always walk well and sometimes falls, her hands will shake and she can’t easily coordinated things like putting pegs into a peg board. It’s causing scoliosis in her spine and is already affecting her heart and this is just the beginning. It causes un-coordination of limbs and as time progresses it will affect her ability to speak, see and possibly hear it is known to cause diabetes. Because FA is an inherited disease, once one family member is diagnosed any other siblings has a 1:4 chance to inherit the disease as well. This means our other daughter is now at risk. Worse yet, FA currently has no cure and no effective treatments.
How do you process this kind of news about your child? Our hearts are constantly breaking with fear and the possibility that we may lose our little girl long before she ever gets the chance to experience life. We watch her suffer in pain and cry about her body not working and kids teasing her about the way she walks and it’s killing us.
When we received the diagnosis, Julianna had just turned 11 only 2 weeks before. Our little girl has her whole life ahead of her. As a parent, you begin to ask yourself a million questions starting with – Why? Why my baby? Why not me instead? How can this be happening? To her? To our family? The answers to the questions never come… Instead, your whole world collapses as you try to process what’s going on. Your life has just changed forever and as a parent you are helpless, you cannot do those things parents do everyday, make the pain go away, tell your child don’t worry everything will be okay. Unfortunately, we can’t stop the pain and we can’t stop this debilitating disease from taking over her life – our life.
Every day for Julianna is different – she has good days and bad but our job as parents is to keep it together so that her life can continue as ordinarily as possible. One day she’s running around playing with the other kids, giggling, laughing and bursting with energy – and other days she barely has the energy or strength to stand up. Julianna is aware of the fact that one day she will have to be in a wheelchair. When she asked me that question, I remember thinking I have to be honest. When I told her yes that she would most likely be in a wheelchair at some point, I remember the look on her face…….. devastation. I swear I couldn’t breathe. She starting sobbing hysterically and as we cried together I thought to myself, how can I ask my child to deal with and understand the very things that I myself cannot comprehend and am unwilling to accept?
Although there is no cure for FA, there are clinical trials, stem cell options and new studies that continually emerge. The medical community has found some success in slowing down the progression of the heart damage but nothing yet to slow down the progression of the many other symptoms associated with the disease.
We want to do everything possible to try to help Julianna but we are overwhelmed at the thought of the expenses that are to come – the travel costs to other countries for new clinical trials, medicine, medical bills, modification of our home and car to accommodate her future wheelchair needs… The list goes on and on… But it is scarier to think about what Julianna’s fate might be if we do not prepare ourselves for the expenses she will inevitably require as time goes on.
We can’t get through this difficult time alone. We need help, and, as humbling as it is to say, we need your help. Any contribution you can make to help Julianna would be greatly appreciated – whether it is a monetary donation or simply sharing this link with your friends and family.
We are not at 501(c)3 organization so any contributions that are given are considered gift donations and are not tax deductible.
(For those of you who do not like to donate on-line you can donate at your local TD Bank, to Julianna A. Frontiero)
We appreciate all of you for taking the time to read this.
Tony and Debbie Frontiero
To help Support this family Click link below
A night of fundraising has planned by family and friends of Tony & Debbie Frontiero at Captains Carlos on Saturday November 22 @ 7pm
see below for ticket information and details
Hi Everyone! This is Lillian LoGrasso and I’m excited to host my 2nd Shopping Night Extravaganza at the Cruiseport Gloucester on Friday, November 21st, 2014! Last year I had this fundraiser for my daughter and her classmates that went to Italy and it was a huge success! This fundraiser is for the Gloucester High School students that are traveling with the school to Italy and France during April Vacation in 2015! The fundraiser helps ALL the kids go that want to go and experience this amazing opportunity! The Shopping Night Extravaganza will include over 20 amazing vendors for you to shop with all in one night! There will be a fun DJ and a cash bar so you can enjoy a cocktail while you shop! THE BEST PART IS FREE ADMISSION!!! There will be tons and tons of raffle prizes for you to buy tickets for!!! And a 50/50! So girls and guys, Mark your calendars and bring all your friends and family!!! Remember all the money goes to the the kids so bring your big wallets!! hahaha Thanks so much and I look forward to seeing you all xoxo Lil
Video taken from son Bj’s Cell phone…
I accidently disturbed an underground bees nest this afternoon while working in the backyard with St. Barry. Within seconds of feeling a sting I was surrounded by hundreds of bees, which chased me all the way around the house as I ran for cover yelling OUCH!
Argentina Beer Garlic smash one and put on,rapido!!
Andrea Rubino Toppan Paste with meat tenderizer and water
Ann Mulcahey Capsazun
Paula Bertolino wash it with soap and water and put an antiitch cream on. I got stung a month ago, then Andy went out and got stung too..Just like you. I ended up in the drs because the swelling was so bad and got a red line up my arm.
Lorinda Barry Canty I got stung a couple of weeks ago for the first time in my life…I mixed baking soda and some water made a paste, spread it on and let it dry…And then I repeated it…
Rosaria Giambanco- Floyd Holy shit it sounds like cooking recipes just make sure the string is out keep clean call me morning
Paula Bertolino I did the baking soda and water too and the dr asked me why i did that.
Katelyn Foley Vinegar!!
Julie Sanfilippo Press the side of a knife on it for a few minutes. The metal takes the pain away like magic!
Rosa Mortillaro Put a potato on it it will take the stinger out
Kristin Michel Windex – it worked for everything in My Big Fat Greek Wedding
Annmarie Manninen Wonson Actual meat tenderizer
Pam Lane believe it or not Meat tenderizer. It draws out the stinger….also a paste of baking soda works too.
Rosemarie Calomo Vizena Hope you are doing better.
Alison Lote Monell Windex!
Didn’t you see “my big fat Greek wedding “. ?
Hope it’s better
Felicia Ciaramitaro Mohan just did the baking soda … feels a little better after several applications! I have a high tolerance for pain…Wow can’t believe how much my back hurts…
Yesterday afternoon Daughter Amanda and I shared a beautiful mommy daughter afternoon in Rockport together, playing tourist, after dropping a special Surprise Birthday Gift off at “My Place Restaurant” at the end of Bearskin Neck for my BFF Dee Noble. Bearskin Neck is really a great place to visit if your in the Cape Ann area. They have it all, a wide variety of shops, food, and art galleries, with the bonus of breath taking scenic views in its mist. Amanda and I shopped our way down the neck, in and out of several gift, jewelry and clothing stores, explored a few art galleries and enjoyed a slice of Apple Strudel at the Famous “Helmut”s Strudel” Of Bearskin Neck. The Last Resort Located diagonally across from Helmut’s Strudel really struck a cord in me, returning me back to the days of shopping with my Mom for specialty Baby clothing for BJ & Amanda when they were babies. My heart was fluttering as I took a few photos of their gorgeous lien and cotton infant and toddler clothing yesterday. If your a Grandmother or parent in the Cape Ann area this holiday weekend, who is looking for beautiful boutique style children clothing, run don’t walk to “The Last Resort” on Bearskin Neck…and tell them Sista Felicia sent you!
Senator Bruce Tarr Takes The stage In Last Nights Annisuaam Village Players Production Of “Peter Pan”
Peter Pan and his Beatuiful Mermaids
The amazingly talented Elliot Davis Of Hamilton Ma.
Click See more for photo gallery of back stage photos of “Peter Pan”
Leaving the altar for the procession around Fort Square
Each year hundreds gather at the altar around 11:30 pm Fiesta Sunday evening, to line up for the ceremonial procession of parading St. Peter around Fort Square before returning him to the St. Peter’s Club window. This procession around Fort Square marks the official end of The Feast Of St. Peter.
Procession Leaving Fort Square, heading to St. Peter’s Club to return St. Peter statue to the Club window
The voices of parade goers screaming the St. Peter Chant “Ma Chi siammo Tutti Mutti”….”Viva San Pedro” echoes’ throughout the downtown area of Gloucester.
Our twins, BJ and Amanda’s first Fiesta Sunday in 1999 with my mother Pat and her father, Joe Ciaramitaro, AKA legendary “Joe Popcorn” of Gloucester, dressed in their first Fiesta Whites!
Today BJ and Amanda will be walking in the St. Peter’s Fiesta Parade carrying my paternal Grandfathers boat oar “The Benjamin C” with dozens of other carriers honoring the legacy of the Gloucester Fishing Fleet.
I will be photographing everyone wearing Fiesta Whites along the parade route…smile for the camera!