Tuesday, September 16, 2014

One More Angel in Heaven

I am in tears as another Batten beauty has passed. Sweet Ali, age 7 is now free! There is no doubt in my mind Charlee was there to greet her friend and is running and playing with her right now. I know Heaven is much sweeter now that you are there Ali! Love you sweet girl! #alisangels
 

Rainbows

Rainbows are so beautiful and special to me. I was 6 years old when my dad died, since then every time I've seen a rainbow I would always think of him. I would think it was his way of smiling down on me. Well yesterday on my way to work, I saw a beautiful small rainbow, I couldn't help but think of my dad and Charlee together in Heaven smiling down on me! God is real and He is great!
 

Sunday, September 14, 2014

Our Last Day

March 14th we enjoyed the day with our girl. We each wanted to give her what ended up being her last bath. I took her right side, Jeff took her left and my mom washed her hair. We all enjoyed every minute of it. When it was time to blow dry... her hair, her daddy wanted the pleasure of doing it for her (something he had never got the chance to do). The last day with our Charlee girl 6 months ago was filled with hugs, kisses and lots and lots of cuddles.
 

Saturday, September 13, 2014

Following My Heart

On March 13th, Jericho and Cashlee went to say good morning to their sister before they left for school. This was the last time they saw her awake. I am so glad I followed my heart and took the time to snap these pictures. It's been 6 months since we've seen those beautiful eyes open. We miss you baby girl!

Thursday, September 11, 2014

Year of Firsts

I am missing this girl today more than ever! I am almost half way through the "year of firsts" without my Charlee girl and it hurts so bad! I miss seeing her smile.
 
 

Wednesday, August 27, 2014

A New School Year

As everyone starts the new school year, I can't help but miss my Charlee that much more! Instead of her walking to her first grade class, her beautiful picture hangs on a memorial wall at her school. What a treasure her memory is indeed! #charleesangels

Monday, August 18, 2014

A True Beauty

With the Charlee Challenge under way, I thought I'd share Charlee's before and after pics from a year ago. We have 12 inches to donate, but I just haven't been able to part with it yet. Her hair will also be donated at her 1 year mark in March.  She had the most beautiful hair, but it became too hard to control. She was a true beauty inside and out!

Sunday, August 17, 2014

Charlee Challenge

March 15, 2015 will mark 1 year of our Charlee girl going to Heaven. So to honor her, Cashlee & I will be donating our hair...we have 7 months to let it grow, grow, grow!
What better way to honor our girl than to help someone else fighting a hard fight!
We challenge any and all of you to join us in this Charlee Challenge!

Saturday, August 16, 2014

We Were Blessed

I've been thinking a lot about something that was said at the Batten Conference during the memorial service.
The pastor spoke about a lady he used to visit in a nursing home. During one of his first visits, she told him about her late husb...and. They had only been married a short time when he was in horrible accident leaving him severely disabled and even bed ridden. She was his care taker for many, many years. When he heard about her trial he said "I'm so sorry!" She said "don't be sorry! I was honored to care for him and learn all I did from him!"
As we heard this, we thought the very same thing about our Charlee girl! What an honor it was to be her care takers. As hard as it was to watch her lose ability after ability and have her become completely bed ridden, we would do it a thousand times more. We were proud to help her through all she endured. The things she taught our family, changed our lives for the better! All of a sudden the little petty things in life didn't seem to matter. We enjoyed the simple things in life. We became more compassionate and more loving.
She was truly an Angel. She was perfect! She was beautiful, strong and had an enormous spirit. Anyone that has ever seen her sweet face has been touched. So I tell you now, don't be sorry for what we went through because we were blessed to go through her trial with her! We were honored to take care of her and learn all we did from her! She taught us more in her short 6 years than most learn in a whole life time. We love you Charlee Bear!

Friday, August 15, 2014

5 Long Months

To my dearest Charlee, it's been 5 long months since I've held you in my arms, felt your heart beat for the last time and had your physical body in our home. We miss you more and more everyday. Our lives will never be the same.
Like the words in your chorus say:
You'll stay right here inside our hearts
Holding us in your sweet hands
We love you so and we know you know
How you've changed the world for us
Yes, you've changed the world for us
Charlee
We love and miss you baby girl.
We know where you are and only can imagine how happy you are. You have a much greater mission on the other side and I'm so proud to be your mom!

Wednesday, August 6, 2014

Every Teardrop

HE GATHERS EVERY TEARDROP

Regardless of the circumstance,
Regardless of the fear,
Regardless of the pain we bear,
Regardless of the tear,...

Our God is ever in control,
Performing as He should,
And He has promised in His word
To work things for our good

But as a loving Father would,
He sometimes lets us cry
To cleanse the hurt out of our heart,
To wash it from our eye.
Yet gently gathers He the tears
Within His hands to stay
Until He turns them into pearls
And gives them back someday.

Glenda Fulton Davis

The day we went to dress Charlee a lot of tears were shed by all in the room. I leaned over her and just let it out. Later that night I was looking at the pictures taken and noticed a tear fell perfectly on her face like she was crying with us! This is a treasure I will always hold near my heart. It made me think that maybe she would miss us just as much as we'd miss her!

The hurt fills my eyes and the tears come daily for my Charlee. I miss her so very much, but I know she is dancing in the sky and perfect in every way. I went to her grave today for the first time all by myself. I talked, I cried and I sang to my sweet girl. A very peaceful feeling was felt today.
 

Tuesday, June 24, 2014

Our Baby Girl

Charlee was everything we could've ever asked for. Her smile brightened our hearts and strengthen our faith. We miss and love you baby girl!


Monday, June 2, 2014

Our Angel Charlee-Video

We'd like to give a big thank you to our sister-in-law Jolene for making this amazing video. We were very blessed to have had the opportunity to have such a beautiful piece of music made for Charlee. At a hospital stay in February we met Amanda & Lyndi, the musical therapy girls at Primary Children's Medical Center. They came in after Charlee had only a few hours of sleep all night due to the pain she was having, she was screaming every few seconds. Charlee loved their sweet...
voices so much she calmed down and fell asleep for 28+ hours. Before they even wrote this amazing song, I did an off the wall thing. I asked them if they would sing the song they were about to write at her funeral. Little did I know that would be less than a month later.
As we sat with them, we reminisced about Charlee's passions... how she loved to sing and dance. How she has taught us so much and she changed our whole world. We gave them 2 pages of notes to use for the song. By the time they left I thought, I hope that was useful. How are they going to write a song from that?!? Well much to my surprise less than 24 hours later they came into Charlee's hospital room and performed her song. Tears flowed and our hearts were full. What an amazing talent they have. Their voices give me the chills. They recorded this song for us in their studio and Charlee was able to hear it almost everyday before she passed.
We can not thank these girls enough. We love it and hope you do too.
Please share with everyone you know. Too many children are suffering and dying from Batten Disease. Awareness is key to finding a cure.

 

Look for the Blessings

I saw this and it hits close to my heart. As much as caring for a child with a terminal disease was a STRUGGLE it made me see the strength I never knew I had. I'd do it over and over again for my girl. She taught us all so much. Her spirit ...radiated and she made our home a home of peace and love. I struggle each day now because I don't have my baby to care for, bath, feed and cuddle. She depended on us for everything! I miss that!
Embrace your struggles, let it strengthen you and look for the blessings in it, for there are many!


Friday, May 30, 2014

Fly High Sweet Kennedy

Our hearts are full and our tears are flowing today. Charlee and Kennedy are together, running, laughing, talking and dancing. They had a connection no one could explain. Their spirits spoke every time they were together. They are best friends, loving life in Heaven. 
 You will forever be missed! You touched so many lives and we are so grateful we got to know you and your wonderful family.
 Fly high sweet Kennedy. We love you!





As many of you may know or can imagine funeral costs are enormous. Any amount will help make the financial burden lighter for the Hansen family. Please visit http://www.kennedyshugs.com and donate what you can. Please also remember to pray for peace and comfort for their family through this very difficult time. Thank you all.

Sunday, May 25, 2014

Saturday, May 24, 2014

Charlee's Angels Ride Update

There will be a volunteer meeting at murray park on Sunday June 1st at 4:00. If you'd like to volunteer and can't make it, please email Jolene Nelson at pplprowler@yahoo.com. We'll meet once more the week of the ride, Wed. or Thurs. evening. Thanks for your support and hope to see you there!

For more details, you can also follow updates on our facebook page: 

Thursday, May 15, 2014

2 months..

8:59 am 2 months ago today, Charlee left my arms and went straight to His. It brings much comfort to know that she is dancing, singing, talking, seeing and playing like a normal healthy 6 year old! 
How I long to hold her tight, kiss her a thousand times and tell her I love more than anything. We miss her more than words can express! I feel like Mitchell's father from Mitchell's Journey, "I'm okay, but I'm not okay and that's okay." I'm sure for anyone who's lost a child this is the case and it's okay!
I love you my Charlee Bear. You are always in my mind, heart and soul. We love and miss you so very much!


Sunday, May 11, 2014

Being a Mother

There is no greater calling in life than being a mother especially to this beautiful girl. I sit here today completely heartbroken, I miss her more than words can express. But at the same time I am happy for her. Happy she is free from her diseased body. Happy she spends this day with Jesus. Happy she can see and feel my love for her. 
Happy Mother's Day to all you special ladies. Hold on to your children tight as tomorrow is never promised. Much love to you all!




Friday, April 25, 2014

Make a Wish!

This is our sweet girl just a year ago this month on her Make-A-Wish trip. What a magical trip we were blessed with. She loved Splash Mountain and the Thunder Mountain roller coaster. So much can change so fast. Love more freely and forgive often, you never know when it will be too late. Thank you Charlee for blessing us with that beautiful smile. We love you baby girl.


Wednesday, April 23, 2014

Precious Angel

I never imagined that I would post these images on Facebook but I can't help but share her beauty with all of you. I know she holds a piece of each of your hearts. 
I have never seen a deceased being look so incredibly beautiful. She looks older, peaceful and happy. She is a precious Angel. I miss and love her so much!




Tuesday, April 22, 2014

Sisters 4 Ever

Sisters 4 Ever, special necklaces given to them by Felicia and her girls a week before Charlee passed. What a great reminder to Cashlee that she has a Guardian Angel with her at all times. I captured this priceless picture just hours before we buried our sweet girl. I can feel the love so strong, it brings tears every time I look at it. I am so blessed to call these girls my daughters! them so much! — with Jeff Nelson and Marcie Lucero.
 
 

 

Another Girl...

Charlee's boyfriend Rex was hugging another girl and she DID NOT like it! lol I absolutely LOVE this picture.
 

Saturday, April 19, 2014

An Easter Picnic

I went  and had a picnic with my baby girl today. I am so glad we picked such a quiet, peaceful and beautiful cemetary. This is our first holiday without her. As hard as it is, I know she still lives, is happier than ever and she is perfect in every way. I love and miss you Charlee Bear. :)

Thursday, April 17, 2014

Thank You!

We would like to give a heart felt THANK YOU to all of Charlee's Angels. Thank you for your love, support, donations and prayers. All your comments are carefully read and appreciated beyond words.  
We are so grateful to be parents of such a special girl, and to know just how many lives she touched brings tears to our eyes and joy to our hearts.  
Her heart was heard in her unspoken words, her smile could change your whole day and her spirit was bigger than the sea. 
Our Charlee girl lives on...she is her funny, spunky self again and she is dancing with the Angels!
We can not wait for the day we can hold her again and see that beautiful smile.
Love to you all,
Catrina & Jeff Nelson



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
 
 

Saturday, March 15, 2014