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
 
 

Saturday, March 15, 2014

Our Angel in Heaven

an aunts sweet tribute to our Charlee
 
 
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Fox News Interview

Fox News Interview
 
 

Thank You!!

We are so grateful and touched by the outpouring of support and love we have seen and felt. Thank you so much to everyone!






In the Arms of the Angels

You will be missed little Charlee, be free and dance with joy finally. Funeral arrangement information to come. 


Thursday, March 13, 2014

Today as HB105 becomes Charlee's Law

Here are some wonderful pictures from today at Utah's Capitol Hill

"Beautiful Charlee with Rep. Ray, awaiting Concurrence with Jeff and Catrina Nelson, Laura Warburton and Rep. Gage Froerer at the Utah State Capitol."
-Annette Maughan



"Hb105 is now Charlee's. - with Jeff and Catrina Nelson, Rep. Gage Froerer, Jennifer Hardy may and Annette Maughan"
-Laura Warburton



"My thoughts and prayers are with Charlee and her parents this evening"
-Rep. Gage Froerer

" The Nelson's with little Charlee, our Laura and Rep. Froerer during the Concurrence for Charlee's Law- with Jeff and Catrina Nelson, Rep. Gage Froerer and Laura Warburton"
-Annette Maughan



"Man, this is exhausting! Lol, our baby girl. Big day for our Angel!"- Catrina Nelson



"HB105 is now known as Charlee's Law. I'm so glad she and her parents could be at the Capitol Tuesday and today for this tribute to sweet Charlee...."
Here is Charlee and her parents on the Senate floor as HB105 passed unanimously. Senater Urquhart declared the bill too late to help sweet Charlee, but commended the Senators for their favorable vote"-Emilie Campbell



Thank you so much for everyones support and pictures!

Wednesday, March 12, 2014

Charlee's Bill

Today it's daddy's turn to be on the front cover of the Salt Lake Tribune! We feel so blessed to have been invited to the Senate Floor, during the vote. The feeling we received will forever be in our hearts! THANK YOU!!
 
 

Exciting Day!


WOW, what an exciting day for families who have children who suffer from epilepsy in Utah. We'd like to thank all those involved in the fight to get the cannabis oil to pass in our state. We'd like to express our heart filled appreciation... to you all for allowing Charlee and our family to be a part of something so special. We are speechless tonight as we are still in shock that the bill will be named after our sweet angel! "Charlee's law" will soon be heading to the desk of Gov. Herbert who is expected to approve the bill. What better way to honor such a courageous little lady!? Thank you from the bottom of our hearts!
The last video updated at 10:22pm is the one that shows us on the Senate floor as it UNANIMOUSLY PASSED today! The feeling of love and compassion we felt today is something we will never forget!
Thank you,
Jeff & Catrina Nelson


 

Salt Lake Tribune Article about our Charlee

This is a nice article the Salt Lake Tribune did on our Charlee girl. It is nice to raise awareness for Batten Disease and to help fight for the cannabis oil to be approved here in UT! Our little princess continues to touch peoples lives!

Sunday, March 9, 2014

Prayers of an Angel

This was taken a few nights ago when we thought we had said our finally goodbyes. I will treasure this forever as it looks as though she was praying to our Father in Heaven. Maybe she was asking for more time or maybe she was asking to go Home. Either way I know He is right there with her and only He knows the plan. 
Many of you are new and I thank you for the love and support. I've had a lot of you ask what she has. Charlee was diagnosed 1 year ago with Late Infantile Batten Disease (bdsra.org). When she was born we believed we had a completely healthy little princess. At 3 1/2 years of age she had her first seizure. Since then, we've watch her singing, dancing, talking, running, seeing and playing be taken away from her. She now can't do any of the above and has to be fed by GTube. Batten Disease is a genetic neurodegenerative disease. There is a buildup of substances called lipopigments, they buildup in cells of the brain and the eye, as well as in skin, muscle, and many other tissues. 
We are just enjoying our time left with our Charlee and thank you all for sharing her journey with us.


Saturday, March 8, 2014

Sweet Angel

Wow. How blessed I am to have this sweet angel in my life. Charlee bear I love you with all of my being. 
She is still fighting. She is very weak and having the same issues, autonomic dysfunction and vital variation. Her urine and stool output is very minimal. :( Only God knows how much time she has left, until then we are holding her close and enjoying every minute. Thank you all for the strength and prayers. Love to you all.

Wednesday, March 5, 2014

Home from the Hospital!

This is the smile we got when she heard "we are going home!" It's so nice to have her home again. To have her sweet spirit radiate here is the greatest feeling in the world. With her vital variation and autonomic dysfunction they are giving her weeks to months to live. Even after the extensive bowel clean out at the hospital last week she continues to have problems. They are afraid her "urge to go" is gone. Her brain just isn't communicating to certain areas of her body anymore. If this continues to be a problem she will go sooner. The end is nearer than we thought. Please pray she will be comfortable and at peace for the rest of her time on this earth. 😥 Until then we will enjoy every minute with Our Angel Charlee!