Born on 5/25/12
Fourth child of five because Aurora came after him, now he too was an older brother !! Unfortunately the mutation of the scn2a celo gene took away too early at the age of six on 01/18/2018.
He has always fought against the cursed seizures but one day they decided they needed an extra angel and they took our Daniel. Now from there he protects us and watches over us. You will always remain in our hearts, we will love you forever.
On September 23, 2018 Lucca returned to God’s side
Real angels have wings ... and do not linger on Earth. Real angels are wise and in a short period of time they can leave a legacy of profound lessons. Lucca is an angel that came to earth with a beautiful and short yet a magnificent mission.
God, with its infinite goodness, blessed us with a beautiful angel. With only one year of life, Lucca taught us so much.
Even when so much chaos, violence and intolerance was present in Brazil, Lucca could promote union of people of different religions and political views. People that did not know how to pray, learned it, just to pray for Lucca.
In hard times, God sent us a special son, in order to teach us so many important lessons, to transform us in better human beings and to fill up our hearts of love and faith.
We, I mean our family, friends and many others that I haven’t even meet before, prayed and sent him love. While we were doing that we hardly knew that it was us who were being touched and transformed.
Who won was the universe and all of us.
There are no coincidences but god’s plans in my baby's life and ours as well.
There are no words to describe all the experiences that we had in this one year of his life: unconditional love, daily renewal of faith, learning, gratitude ...
God, Our Lady, Jesus, the Holy Spirit, angels, They all made themselves present and revealed themselves to us during that time. I am so grateful, my God! I feel blessed to have experienced your love for us through our son.
On September 23, 2017 through a miracle God allowed our Lucca to be reborn during his baptism. At that time, we were gifted with Lucca for one year. On September 23, 2018 Lucca returned to God’s side. In our hearts there is only gratitude. We are thankful , for being chosen among so many people, to love, care and introduce to the world an angel enlightened by God.
Lucca, thank you for transforming us and having resignified our existence.
May 2, 2006 - August 16, 2018
Only the lucky few get to experience the magic of raising a unicorn. They’re rare. They require vigilant care. They are brave, strong and beautiful. They push others to change the way they see the world.
Amelia Rose Weaver, 12-year-old unicorn, of Hibbing, is no longer suffering after a lifelong battle with Scn2a. She passed away Aug. 16, 2018.
She’s most likely having a dance party in heaven. While she is missing her sister, Penelope, her favorite dance partner, she knows they will one day be together again shaking it off to TSwift, of course, in matching outfits.
Amelia’s Unicorn life mission of spreading hope and fighting on lead her to experience a lifetime in her short years. Amelia was incredibly proud of being a part of advocating to change two laws in Minnesota so patients like her could experience quality of life. Amelia continued to share her life experiences, hoping to encourage everyone around her to Fight On in theirs.
Unicorns can be camera shy, but thanks to her scrapbooking, picture happy Mom, Amelia learned to embrace the selfie. She thought it was pretty cool that her story was in a museum, newspapers, magazines, the news and even on billboards.
No one fights alone, and Amelia always felt the love surrounding her from her family, friends, Scn2a family, therapists, nurses, doctors, supporters and community. This support often got Amelia through the tough times and long hospitalizations.
Unicorns love to travel, and Amelia was no different. One of her favorite vacations was her Make-A-Wish Trip to Orlando, Fla., where she got to experience some of her favorite things: Star Wars, Harry Potter and Cinderella. Not having to wait in lines was pretty great too.
Unicorns don’t believe in regrets, and Amelia lived in such a way that she had none, except maybe not getting to see a Vikings Super Bowl win with her Dad.
Loving a unicorn is easy. Learning to live without seeing one everyday won’t be. Amelia asks that you continue to surround her family with love.
July 7, 2012 - May 1, 2014
Aaliyah began having seizures at 12 hours old and succumbed to the disease at 22 months of age. Aaliyah fought a tough battle and we are so proud of her. We miss our beautiful angel everyday and Aaliyah will always hold a special place in our hearts. In memory of our gorgeous girl, we take part in the Melbourne Marathon every year to raise money for research into SCN2A.
March 25, 2016 - October 25, 2017
From the moment we knew Camden would be born we loved him. Camden’s life wasn’t one of favorite colors, toys, or cartoon characters. His life was one that showed the Miracle of Christ. Camden touched so many people’s lives, some of which will be in eternity with him because of the story he lived. Though it was only 19 months God made that 19 months beautiful and we will never be able to forget the impact he had here on Earth. We will see your sweet face again Camden.
"But Jesus said, suffer little children, and forbid them not, to come unto me: for of such is the Kingdom of heaven." -- Matthew 19:14
March 8, 2014 - November 29, 2016
Charlotte, daughter of Tracy & Junji and little sister to Sophie was on a mission to check experiences off her "Joy List." The list was filled with all the experiences: some big and some little they wanted her to enjoy in life. Tracy writes: "The Joy List taught us to look at and embrace the Joy of life more purposefully; which is especially important to do in times when the world seems dark and suffocating."
Charlotte touched the lives of so many people. She even touched those who never met her in person. Charlotte's legacy will live on through those who help spread JOY all over the world each day. To see Charlotte's Joy List and help her legacy live on click below on the button labeled Seize Your Joy. May Charlotte rest in peace.
March 29, 2016 - December 8, 2016
The year in which there was huge joy to have experienced and what grief has ended. The year of our beautiful lovely daughter Figèn Janne is born and we were allowed to feel what real love is. Unconditional love. The year in which we have a close relationship with Figèn may build up and have her may know as she is and always will be. The year in which we had become very concerned about her health and didn't know what the future would bring. Also the year that we wrestled with terror. May Figèn rest in peace.
Oct 5, 2012 - May 19, 2014
Norah GraceAnn Johnson was born on 5 Oct 2011, and for two and a half years she battled seizures and an enemy of which we knew very little. She fought bravely and with a smile on her face, but she was called home on 19 May 2014.
March 26, 2013 - March 21, 2018
My child finally rests, has found peace and has earned it, the seizures, irritability, respiratory infections, sleepless nights and continuous visits to the ICU are over, fear and anguish for not being able to help him.
Gonzalo was a beautiful, affectionate and sweet child. He suffered to exhaustion, I always thought that his weak point was the respiratory one but, against all odds, it was his own encephalopathy that consumed him.
I know with absolute certainty that everything possible has been done for Gonzalo, each and every one of the people who have known him, loved him and taken care of him to make his life a little easier. Now, although broken by not being able to have more in my arms, I also feel peace for the first time since Gonzalo was born. I leave you the best of us.
