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Concerning kids who battle Batten disease (neuronal ceroid lipofuscinoses or NCLs), “Is it them or is it us? Is it the feelings that they produce in us or is it that there is something truly special about them? I think that the answer has to be all of the above. It is them, but they also do something to us. Once you give a little piece of your heart to these kids and their families, they come close to taking all of it.” That is what happened to me! Hello Everyone. These kids changed my life to a large degree as I was taken over the plight of one little girl. Through these kids, I have learned that it is important to look beyond ourselves and take notice. I've stated that Kids that battle are the most special and the most amazing and I believe that this is true. They are strong and resilient, even if unaware of the plight that they are involved with. I first became aware of kids that battle Batten disease as I learned of a little girl who fought the disorder. She really caught my attention and I began to write through a series of events …. never looking back. Hidden in between the titles of all of the stories is my own. These kids taught me how much I love to write. I’ll never win an award but the kids that battle taught me that I have a passion for sharing their stories with others. They are stories that are full of heartache and grief. From a distance though, you can observe a love that is profound and undying.
I have now branched out a bit to include some of the families whose lives have been changed by having a child who battles MPS (mucopolysaccharidoses).
The science behind how the cells of the human body work is fascinating. That being said, the result of what takes place when those cells don’t function correctly is devastating. Lysosmal Storage Disorders are my area of focus and these two groups of diseases are both LSDs. Perhaps I will add another lysosomal storage disorder community as time continues. Whatever the case may be, this all started because I was made aware of the plight of one little girl who changed me. I hope that you will take the time to look within. Thanks for doing so. ~Greg Lopez~ Blogger and Advocate HOW THIS BLOG WORKS - Take the titles listed below and go to month and year listed in the archives below (way below). Batten Family
Titles - January 2017 -
*The Story Between The Lines February 2017 - *My Kind Of Royalty - CLN2 March 2017 - *The Caring Type - CLN2 *Face to face: A Fairy-tale -CLN3 April 2017 - *No Ordinary Love - CLN2 *A Rare Friendship May 2017 - *Tyrell and The Rare Love Story -CLN2 June 2017 - *Seth and The Healing - CLN2 July 2017 - *Little John and The Reason - CLN2 *Sands and The Scottish Princess - CLN3 August 2017 - *A Rare Kind of Devotion -CLN2 *The Giggle Box - CLN2 September 2017 - *Austin Smiles *Sweet Montanna and the Status - CLN3 October 2017 - *The Blog about my Blog *Sebastian's Story - CLN8 November 2017 - *Kayden And The Change In Plans - CLN3 December 2017 - *Those That Are Like Them January 2018 -
*Nora Skye - I Know Just Where You Are - CLN2 *Brock and The Priceless Memories - CLN8 February 2018- *Jamesy Boy and The Treatment - CLN2 March 2018- *The Priceless Princess From Beyond - CLN2 June 2018- *That Kind of Love - Conner's Story - CLN2 August 2018- *Lasting Impressions September 2018- *What I See (She is a Butterfly) - CLN1 October 2018- *No Longer Alone - Kristiina's Story - CLN2 November 2018- *Things We've Talked About - Oscar's Story - CLN7 *The Reason Why - Hannah's Story - CLN3 December 2018- *Kayla's Perfect Princess - Breanna's Story - CLN2 February 2019-
*Warriors Unaware - Mia and Kaleb - CLN2 April 2019- *Her Little Story - CLN1 May 2019- *Someone Like Raelynn *Forever Royal - The Final Version - CLN2 August 2019- *Awfully Beautiful - The Life of Noah and Laine - CLN2 September 2019- *A Lifetime of Love - Tegen's Destiny CLN1 December 2019- *Forever Beautiful - Gabi's Story - CLN7 January 2020-
*The Miracle Baby - Amelia's Story - CLN1 March 2020- *Dylan's Life - A Small Town Story - CLN2 May 2020- *Princess Grace and the Challenges - CLN2 June 2020- *Anything for Tessa - Her Story - CLN2 September 2020- *Haley Bug's Battle - A Family Story - CLN1 November 2020- *Journey Unexpected - The Rich Family - CLN2 January 2021-
*My Life, My Everything - Lydia Rose - CLN2 February 2021- *A Love That Hurts - Shashka's Story - CLN2 July 2021- *The Things Looked Forward to - Addy’s Story - CLN3 November 2021- *Love Complicated - Bailey Rae's Story - CLN3 April 2022- *So Many Questions - Evelyn's Story - CLN2 January 2023-
*The Feelings They Produce - Violet's Story - CLN2 February 2023- *Because of Love - Frankie's Story - CLN2 April 2023- *The Need to Breathe - Scarlett's Story - CLN2 MPS Family
Titles - July 2020-
*The Beautiful Light of Haidyn Grace - MPS3 August 2020- *Any Distance Traveled - Reagan's Story - MPS3 September 2020- *The Missing Someone - Kiernan's Story - MPS3 March 2021-
*The Transformation - Victoria's Story - MPS3 April 2021- *Not by Accident - The Charlie Grace Story - MPS1 June 2023-
*The Difference They Make - Harvy's Story - MPS6 September 2023- *Love Profound - Veda Rae's Story - MPS3 Archives -
April 2024
Highlights from the beginning. When the blog was named gregster60.com - Benjamin's Daddy - March and June of 2016 - Revised May 2017, titled Benjamin's Daddy Revised. My Fearless Adventure - April and May of 2016 A Different Type of Warrior - January 2017 Letter to Larry - February 2017 |