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Livy's Hope Blog

Welcome to the Livy's Hope Blog!

I Have a Confession To Make

I had to take a moment out of this exciting, crazy momentum and just stop and confess.

At the beginning of this "Lemonade for Livy" campaign, I was the skeptic. Jon had mentioned in a previous blog that I had lost some of the positive beliefs that I once had. These past nine years have been tough on me and my soul. I was always the optimist and could always find the good in every situation. I wish I could say that I still felt that positive flow of energy every day, but that part of me has been hidden for some time.

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Guest — Carol Lee
Allison, I have a confession, too. I would like to have been much more involved than I have been. I follow your posts faithfully... Read More
Tuesday, 22 July 2014 20:03
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Livy's Hope Kids Crew Fundraiser

The kids from the Livy's Hope Kids Crew are raising money to help fund 80 gifts they will be putting together on April 26th to give to the moms staying at the Ronald McDonald House Charities of Tampa Bay on Mother's Day. 

Please consider making a donation to help fund their wonderful efforts! Each gift bag will contain items such as a handmade gift, body lotion, lip balm, a manicure set, body spray and a delicious cake pop by Painted & Sprinkled!

The more the kids raise, the more they will be able to add to the gift bags. With your help, they will be able to show these moms that they are cared about as their children are in the hospital.

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This Ending Is Only The Beginning

This Ending Is Only The Beginning

What an amazing year it has been! We never could have imagined we would have been able to accomplish all that we did in one year's time. The last few months were particularly busy and seemed to go by in a flash. Livy's Hope has made such a difference in our lives and we hope in the lives of others as well. I have a feeling this is only the beginning of something bigger and more inspirational.

We are excited to share with you that our video "I Am Hope" for the Livy's Hope For A Cure campaign has been chosen as a finalist for the WEDU Be More Awards! The ceremony will be held on February 20th in Tampa. This is a wonderful honor and we are so proud to be among the finalists.

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Art Auction by Hailey "Summer Breeze"

Art Auction by Hailey "Summer Breeze"

August is the month of AUCTIONS for Livy's Hope For A Cure! We are asking people to create something original or find something they no longer want and auction it on eBay or sell it at a yard sale. Then, donate the money to help fund epilepsy research. 

Hailey has created this beautiful landscape of the Gulf of Mexico viewed from Dunedin, FL. The bidding begins today and ends in three days. Don't miss your chance to win this artwork and at the same time help the Epilepsy Foundation to fund research for a cure! Click here to visit the auction.

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Guest — Susan sullivan
Very unique painting done bt Hailey,I paint also, she is good. Good luck with the bidding.
Thursday, 08 August 2013 22:31
Guest — janet n
Thank you! This is very interesting and useful information. http://www.policeauctions.com/... Read More
Friday, 27 February 2015 13:43
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Livy's Hope For A Cure

It’s 8:00 on the morning of December 15, 2004. I stand with my arms braced against the sink staring into the mirror at myself in the men’s bathroom at All Children’s Hospital in St. Petersburg. I am haggard with red eyes and a dazed, confused look about me. This should be the happiest day of my life. I am a first time dad. My wife, Allison, gave birth to our twin daughters, Hailey and Olivia (Livy) only 4 hours earlier. Instead, tears of grief, not joy, stream down my cheeks. I have just witnessed Olivia having her first grand mal seizure in the neonatal intensive care unit. She is only hours into this world. We would later be told by a doctor that she may not live to be a year old.

After a month at All Children’s, we traveled to Boston Children’s Hospital to see a specialist. We had only been there a short time when we were asked if we had considered a DNR (do not resuscitate). Livy’s condition worsened so we baptized her in the hospital in case she never made it home. The doctors gave us a diagnosis of generalized cortical dysplasia (a brain malformation). Remarkably, three months later and with Livy subdued on five anti-seizure medications, we flew back to Florida to All Children’s while we waited for a room to become available at the Woodside Hospice House of Pinellas. We were completely unprepared both physically and emotionally to care for such a medically complicated child.

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Recent Comments
Guest — Harold Lampert
Beautiful video; you guys are amazing!
Friday, 31 May 2013 11:42
Guest — Carol
Jon, I'm sure I won't be the first one to suggest you write a book. You are gifted... I'd like to buy a campaign t-shirt but didn'... Read More
Saturday, 01 June 2013 09:55
Guest — Carol
Oops! Just found the shirt--hugs,
Saturday, 01 June 2013 09:55
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Stella & Dot Fundraiser for Livy's Hope

Stella & Dot Fundraiser for Livy's Hope

We are excited to announce a fun and fashionable fundraiser for Livy's Hope!

Laura Slook, a Stella & Dot Independent Stylist located in Massachusetts, has chosen to support Livy’s Hope due to the "awe inspiring story of courage and determination that one family has dedicated their lives to."

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A Special Day...A Fun Contest and More!

A Special Day...A Fun Contest and More!

Tomorrow, March 26, is Purple Day! This day was started to support epilepsy awareness worldwide.

Would you please consider wearing purple in honor of this day and for those like Livy that have epilepsy? We are offering a special contest too! Take a photo of you and your friends or family wearing purple and share it on the Livy's Hope Facebook page. Hailey and Livy will choose their favorite photo and we will send you a set of Hailey's "Art by Hailey" notecards!

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Life Is Sweet

Life Is Sweet

Strawberry buttercream, chocolate filled chocolate cake topped with a chocolate butterfly. Life is certainly sweet when filled with such a scrumptious dessert. That was all it took to bring hundreds of people out to support Livy's Hope. The fundraiser at The Cake Bar in Franklin, MA a couple of weeks ago was remarkable. Our friend Tracie and her staff worked tirelessly to keep the cases full of mouthwatering cupcakes. In the end, 2,417 cupcakes were sold! The money raised will help to further our mission of supporting children with medical needs and their families.

I am still amazed by what people can accomplish when they come together in support of a common goal. The feeling of doing something good for others is both contagious and addictive. A small act of kindness is all it takes to change someone's life.

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"Livy's Hope Cupcake" at The Cake Bar

"Livy's Hope Cupcake" at The Cake Bar

We are so excited to tell you about an amazing event that will be taking place next week. We were approached by a very dear friend, Tracie Turinese, owner of The Cake Bar in Franklin, MA about doing an event to raise money for Livy's Hope! She asked if Hailey would design a cupcake in honor of Olivia. As you can imagine, Hailey was thrilled and got right to work coming up with an idea. The "Livy's Hope Cupcake" will be offered next weekend January 18, 19 and 20 at the bakery and all proceeds will be donated to Livy's Hope. Needless to say, our family is so thankful and excited for this beautiful act of kindness. We have all tasted the amazing cupcakes from this bakery in our hometown. Tracie is a gold medal winner of the Food Network Challenge!

The "Livy's Hope Cupcake" is a moist chocolate cake stuffed with rich chocolate ganache, smothered in strawberry buttercream, and garnished with a very special butterfly. Hailey felt it was very important that the colors matched the "Livy's Hope" logo and that the very important butterfly, resembling hope, be on each cupcake.

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Guest — Sara Madden
Hello, My name is Sara and I am the VP of the Franklin, MA SEPAC Special Education Parent Advisory Council. I just heard about yo... Read More
Wednesday, 09 January 2013 17:24
Guest — Carol Lee
Nice!
Thursday, 10 January 2013 18:54
Guest — Lisa B.
Although we were out of town for this event, we heard that it was a huge success! Friends helping friends and a community showing... Read More
Monday, 21 January 2013 20:09
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Follow-Up Article and New Designs by Hailey

Follow-Up Article and New Designs by Hailey

Today has been a very exciting day for our family. The Tampa Bay Times ran a follow-up article from the July 15th story in their Floridian section today about the girls. We were blown away by the response from the article and were so happy to share the support we received. We live in a beautiful world full of so many loving and caring people and Livy's supporters are among them. Here is the link to the follow-up:

Also, Hailey has some new jewelry designs in the Livy's Hope shop. She has been putting her new skills that she learned from the designers at Cousin Corp. to work. Please visit the shop to see the new pieces and some other new special items as well:

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Guest — Gary Parrish
Your entire family is loved so very much, Allison. What a wonderful conduit you, Jon, and Hailey are for the love and power of Liv... Read More
Sunday, 02 September 2012 12:58
Guest — Carol Lee
Hi, girls...and John! What a family! I'm so happy about the articles and their results, especially the lifetime supplies for Hail... Read More
Monday, 03 September 2012 01:45
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"Livy's Hope" Black and Silver Charm Bracelet

"Livy's Hope" Black and Silver Charm Bracelet
This is Hailey's first creation after learning new jewelry techniques at Cousin Corp.

She learned how to use beading wire, crimping beads and how to add toggle closures. The wonderful designers at Cousin gave Hailey her very own special tool kit to use. It was amazing how quickly she learned and picked up the new methods. This is just one of a few she has already put together. Thank you again to Cousin for the beads and lessons.

Please click the link below to bid on this beautiful new creation by Hailey. All money raised by "Art by Hailey" creations goes towards Livy's therapy sessions:


Thank you!
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Guest — Debbie Hadlock
Very pretty bracelet, Hailey! I am holding out for another purple one. I wear my orange one often. I also love the cards I won ... Read More
Saturday, 18 August 2012 15:00
Guest — Debbie Hadlock
Very pretty bracelet, Hailey! I am holding out for another purple one. I wear my orange one often. I also love the cards I won ... Read More
Saturday, 18 August 2012 15:00
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"Art by Hailey" Note Card Set

"Art by Hailey" Note Card Set
We have reproduced some of Hailey's most popular paintings on note cards. The set of eight note cards and envelopes costs $15.00 and comes wrapped in pink rafia with a charm (charm may vary). Shipping and handling is free when shipped to the continental United States. It is a perfect gift to let someone know you are thinking about them or keep them for yourself to send a little bit of hope. All of the proceeds from sales go directly toward Livy's therapy sessions. To purhase your note card set on ebay, please click here. Or, if you would prefer to order outside of eBay, please email us at This email address is being protected from spambots. You need JavaScript enabled to view it.. Thank you for your support!
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Guest — Kathy
I bought the cards and they are wonderful!!! I know I will use them up quickly, but I intend to send them only to special people... Read More
Tuesday, 03 July 2012 17:50
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A Petal's Wish Bracelet Auction

Hailey has created another bracelet in support of Livy's therapies. She finished beading the bracelets requested as a result of the Bay News 9 interview and got right down to something new. Please click here to bid on "A Petal's Wish". We are working on a video to show Livy in action during her last therapy session so stay tuned. Thanks so much for following Livy on her journey.

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Video of Hailey and Livy On Bay News 9 June 4, 2012

Here is the Everyday Hero video of Hailey and Livy on Bay News 9 for those of you who were not able to see it. Allison and I had such a wonderful day and we were so humbled by the outpouring of support.

Hailey also had a great day. She was able to watch the video on TV in her classroom with her friends. I still don't think she completely understands the significance of all she has done. As she says in the video, she does it because she loves her sister. Her devotion at such a young age is amazing and she wears the title of hero with grace and humility. We can only hope that as she gets older, she continues to exemplify the qualities she has exhibited toward Livy thus far.

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Recent Comments
Guest — Paige Spencer
We always turn on channel 9 when getting ready in the morning. Yesterday, I flipped on the TV and there was Hailey! She brought ... Read More
Tuesday, 05 June 2012 06:07
Guest — Melanie Quinton
I am so thankful to have come across your story. I love to open my email and see an update to the blog! Thanks for making my day a... Read More
Tuesday, 05 June 2012 08:25
Guest — Carol Lee
I'm so happy about the recognition for Hailey and your family and, of course, for sharing her story with others who may want to he... Read More
Tuesday, 05 June 2012 09:47
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Lemonade For Livy 2012

The Lemonade For Livy 2012 fundraiser starts this Saturday, May 26th and runs through Sunday, August 26th. We had a lot of fun last year with great participation. We are hoping to make this year bigger and better. The kids who created stands did a wonderful job and really looked forward to selling their lemonade. They all learned a valuable lesson in helping others in addition to competing for the most creative stand. We had some adults participate as well so there are no age requirements to enter a stand. For more information about dates and supporting materials, please click here.

Hailey is really excited about setting up her first stand on Sunday, May 27th. To get the word out and to demonstrate some creative themes, she helped us make this entertaining video. She was such a great sport. She required little direction with the scenes and came up with almost everything on her own. The unconditional love she shares with her sister truly shines through. We are so proud of her for all of her selfless acts of kindness. Please take a moment to watch and share with as many others as possible. The direct link to the video on YouTube is http://www.youtube.com/watch?v=8vS9FoqrmSc if you would prefer not to share the blog link.

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Recent Comments
Guest — Connie L
I love it, that was sooo beautiful, can't wait to share it. You continuosly touch our lives even though we are so far away. We a... Read More
Wednesday, 23 May 2012 00:13
Guest — Carol Lee
This video is precious--and very entertaining! hugs, Carol
Wednesday, 23 May 2012 15:04
Guest — Di Di
Amazing! The very talented Hailey and Livy!
Wednesday, 23 May 2012 21:02
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