Tuesday, April 15, 2014

1 Month Today

Our family group hug before Jeff carried his baby girl to the gurney, a moment that will be in our minds and hearts forever. It's been 1 month today since she took her last breath and yet I can't get myself to move her things. Her wheelchair sits idol on our living room floor, her coat hung on the rack by the door, her stuffed animals lined up on the top of her couch, her rattle safely tucked away in my purse and her pajamas still folded on her dresser.
We miss you Charlee, every single second of the day. You are always in our hearts. We are happy to know that you are happy, safe and loving life on the other side! We love you with all our hearts. -Catrina & Jeff Nelson

Wednesday, April 9, 2014

Families are Forever

March 9th we decided to go for a walk, just the 5 of us. It was the first walk for all of us in month but little did we know it would be our last with our little Charlee.  It was a quiet, peaceful feeling as we all took our turn pushing her, we could tell she was enjoying the sunand breeze on her face. As we rounded the school, Jeff picked up a bottle cap thinking it was trash, as he flipped it over we realized it wasn't trash at all!!! It was a beautiful message, one we've heard a thousand times... but this time it meant so much more! FAMILIES ARE FOREVER!! WOW, the feeling that over came our bodies was one I can't described. The tender mercies of our Savior, reminding us that this is not the end. We miss you Charlee, more than words can say but we are happy to know that your a free, running, singing and dancing. We love you so very much.

Friday, March 28, 2014

Charlee's Last Outing

This is the last outing Charlee would get in her precious life. 2 weeks ago today we took her out to get a picture of her by the tree that was planted in her honor in our church parking lot. Every time I see it, it will be a great reminder of how loved she was by so many. I miss you everyday my Charlee girl! :(


Thursday, March 27, 2014

Charlee's Law (Cannabis Bil)l Signed into Law

Thursday March 20, 2013

SALT LAKE CITY — Parents of children with epilepsy celebrated on Friday as Utah Gov. Gary Herbert signed a bill that gives them access to cannabis oil.
Those families hope the oil can end their children’s seizures.
The governor’s signature comes at an emotional time. House Bill 105, or Charlee’s Law, was named after 6-year-old Charlee Nelson, who died right after the legislation passed. Her funeral was Friday.
She suffered years of seizures due to Batten Disease and was laid to rest in Holladay. Cannabis oil wouldn’t have saved her but could have improved her quality of life, or even prolonged it.
Herbert signed a bill granting parents access to CBD oil the night before Charlee’s funeral. The bill’s sponsor was at the private signing event.
“The governor was very emotional, as well as members of the family,” said Rep. Gage Froerer. ”I think it was very important for them to have closure of this prior to the funeral.”
The new law takes effect July 1.
“A weight has been lifted to know this is reality now,” April Sintz said.
With their doctor’s permission, April and Kyle Sintz can get cannabis oil from states like Colorado. It’s a non-psychoactive extract they can legally possess in Utah without fear of prosecution. It’s for their 7-year-old son Isaac, who suffers from Dravet Syndrome. The family hopes cannabis oil will end his seizures.
About 55 Utah families are on a waiting list for CBD oil in Colorado. With this new law, they’ll go through a program and have access by fall, maybe sooner.
“We’re just overjoyed and thrilled that we finally get to try this but not only that we got to witness history being made,” Sintz said. “We didn’t just witness it, we got to be a part of it.”
Similar legislation just failed in Georgia. Utah is the first state in the country to pass a law like this.
“It’s a huge accomplishment, and it’s amazing Utah did it,” said Jennifer May, who leads the advocacy group, Hope 4 Children with Epilepsy
For May, whose son also has Dravet Syndrome, the new law means she doesn’t have to temporarily move to Colorado, like David and Mandi Cromar, who uprooted their lives to help their epileptic son.
Now, these families have a new option and when Jennifer May heard the news: “tears of joy, tears of shock, tears of appreciation that people understand where we’re coming from,” she said.
In a statement from Governor Herbert Friday, he said: “Cannabis oils show promise of offering some relief to Utahns suffering from seizures and epilepsy and we should do all we can to help them. My concern has been that the products are produced properly and that we have the adequate protections in place. Ultimately, I am satisfied the bill provides for that and I decided to sign it.”
Herbert will host a public signing ceremony Tuesday afternoon with many of those parents and their children who fought for months for this legislation.
 






Tuesday March 25, 2013

Utah to Welcome Marijuana for Limited Medical Use

SALT LAKE CITY (KUTV & AP) Parents of Utah children with severe epilepsy are cheering a new state law that allows them to obtain a marijuana extract they say helps with seizures, but it's unclear how and when they'll procure it.

Utah's Republican Gov. Gary Herbert held a signing ceremony Tuesday afternoon. The ceremony was attended by many emotional supports, who fought to bring the bill to the legislature.

The new law doesn't allow medical marijuana production in Utah but allows families meeting certain restrictions to obtain the extract from other states.

The extract, which some believe helps with a severe form of epilepsy, is produced in nearby Colorado and is designed not to produce a high.

But Colorado experts say restrictions passed in that state to appease the federal government make it a murky process for Utah families to actually get marijuana-derived products.

ABC4 News Story


                    






 

Tuesday, March 18, 2014

Charlee Marcella Nelson

Obituary for Charlee Marcella Nelson


“Our Angel Charlee”

Charlee passed away March 15, 2014 surrounded by her loving family in her home. She was born January 30, 2008 in Sandy, Utah to Jeff and Catrina Lucero Nelson. She was the youngest of three and loved animals, music, books, singing, dancing, and making people smile.

She will always be remembered for her warm smile and beautiful spirit. Anyone that knew Charlee couldn’t help but fall in love with her. She was a little fighter, one of the strongest little girls around. Her strength helped her endure the pain and suffering that was caused by Batten Disease.

The memory of Charlee will live on through a law that was named after her just 4 days before she was called Home. “Charlee’s Law” will bring much needed HOPE to children and their families desperate for a means to gain seizure control. As Charlee’s parents, we are extremely honored to have her legacy live on.

She is survived by her loving parents; siblings, Jericho and Cashlee; grandparents, Marcie Lucero, Gary (Helen) Nelson and many extended family and friends. Charlee was preceded in death by her grandfather, Robert Lucero and her cousin Jaxon Almond.

In lieu of flowers please make a donation to charleesangels.org or any Wells Fargo Bank to the Charlee Nelson donation fund. The family has requested that the services remain private from the general public.

Funeral services will be held Friday, March 21, 2014 at 11:00 am at Mountain View Stake Center, 2901 West 9000 South in West Jordan. Viewings will be held Thursday, March 20, 2014 from 6-8 pm at Redwood Memorial Mortuary, 6500 South Redwood Road in West Jordan and one hour prior to services at the church on Friday. Interment will follow at Holladay Memorial Park.
 
 

Sunday, March 16, 2014

KSL Tribute to Charlee

KSL Tribute to Charlee..
 
 

My Sweet Charlee

As many of you know, yesterday morning at 8:59 my sweet Charlee took her last breath in my arms. She is free, happy, running, dancing, singing, playing and enjoying her sight once again. My world is forever changed. She was one of a kind, the most courageous little girl I know. I am so grateful to be her mother. I know I will be with her again but until then she will be greatly missed! -Catrina Nelson