Who are my celebrities? Why? What is important to me? These are good questions. Do you act for a living. That's great! I watch an occasional movie when it is one that interests me. How about professional athletes? I love watching sports and admire athletic ability. If it was easy, anyone could do it. Right? How about a famous musician? Well I truly love good music. I love to sing. Just don't turn the volume on the radio down too low. I am not a soloist. How about a politician? Are you one of those? Well, I vote but lets not go there right now. Are you a member or the British Monarchy? Well that's really cool stuff. Lots of history and tradition there. Hey! I wonder if I am the descendant of any famous Spaniards? Naw, probably not.
The people that really and truly get my attention are those who battle through hardship and adversity. They can be those who have put themselves in harms way like the members of the military have. Or they can just be someone that has endured a difficult time in order to rise above their circumstances. These days, my focus has shifted to the little warriors and their families that battle through rare childhood diseases. These kids and their families have become some of my heroes! There are a few childhood diseases that have my attention but the one that has received most of it to this point is Batten Disease.
In the last two weeks the small and tightly knit Batten community has lost six of the most beautiful children that you will ever see. The love and respect that I have for these people just intensifies with each new story that I read about. There is nothing that I can possibly do to take away the anguish that they as parents face as they say goodbye to their most perfect little gifts from above.
To you, families, those of us on the outside that follow you are with you although there is no way that we can take away the grief that you are experiencing. I am so incredibly sorry that you have to travel down this road.
Kids with Battens are referred to as Princesses and Princes' because they are beautiful. Only the most hardened of individuals can look at a young child and not feel something as they consider their flawless and pristine little features. These kids, especially, deserve special attention because of all they will endure in their little lives. Their resilience will be on full display as they go through the stages of that which we wish did not exist. They have become royalty to me.
If you have been reading my blog you already know that me and my little family traveled from Oregon to the state of Arkansas in 2014. You know that I went to
honor an American Military Warrior named Adam Brown but also to meet a warrior princess named Ali. A"Lice Brionne Vise of Ali's Angels is, “the one who made me aware and who changed my way of thinking.” I hope that you can see that the entire event has left a lasting impression on me, because it most certainly has.
It was just a single lunch date with Donya Catlett, Ali, and Ali's grandmother, who is lovingly known as Nini Cat. However, it would become a very special event for us. Ali was the most elegant looking little person I have ever seen. As we sat down, Donya rolled Ali’s chair up right next to me. I don’t know how to say this tactfully, so I’ll just blurt it out. I couldn’t keep my hands off of her. Donya understood the moment completely and told me as much at the time.
Have you ever considered the power of human touch? Whether we are talking about the sincerest of handshakes or the warmest embrace. Or maybe just to put your hand on someone’s shoulder to let them know that you care. You have to know that this was an incredible experience for me.
It is one thing to tell a person from a great distance that you love them and that you are praying for them. It is another thing to travel so far and to get the chance to do so in person. It was so easy to see that Ali was loved and cared for. She was dressed to perfection. So elegant in appearance. I had seen so many pictures and it was just amazing to be there right next to her.
I got a chance to see Ali one more time the following Sunday as Donya was dropping her off at Ali’s dad’s house. While they were going over instructions for Ali’s care, I was rubbing her little back and telling her how much I loved her. Then, sadly, it was time to leave. I have had several people tell me that I was lucky to get to meet Ali. I know that there are so many people locally that love her, and of course she has a huge following through Facebook.
It would only be about three short months until Angel Ali would gain her wings. The grief that so many felt was overshadowed only by Donya’s own grief, as well as, the grief of her entire family. Extreme Sadness for all of Ali Nation. Meeting Ali was an experience that I will never forget. It left us feeling like we were in the presence of royalty. In fact, I think that we were!
And now let me tell you about an entire family that has become royalty to me.
There have been several famous couples that have been showcased by the Royal Family over the years. In my humble opinion there are none that have any thing appearance wise on the couple that is Mike Carroll and Lucy Faith. They are both very attractive people. When an attractive couple decides to have a family that usually means that their children will be attractive as well. It is easy to see that is in fact the case. Ollie and Amelia and their other two boys are all very nice looking indeed. Adorable is more the word that I think of when looking at all the pics. Prince Ollie and Princess Amelia are among the many children that have become the face of Batten Disease.
And so, you have a very attractive couple from England who have attractive children, one being a prince and one a princess. I can tell that they are not rich but they are not poor either. They are certainly rich when it comes to traditional emphasis on family and quality of lifestyle.
I had mentioned the little slogans that I had naturally developed for some of the kids that I have followed in my previous blog entry: Where as in Ali's case, There is “none like her although there are many others.” For Kane, “he is adorable. Is he not? He will never be forgotten.” And, “Nora is beautiful and I know just where she is.” Then, when it comes to the couple that is Mike and Lucy plus their four attractive children, one a prince and one a princess, they qualify as being my kind of royalty. I am calling them "My Royal Family!"
What? Are you saying that they are your royal family too? Well I guess I will have to share. Won't I? Let's get serious. Well I am in large part.
I can only imagine that Mike and Lucy would prefer that this guy from Oregon USA didn't even know who they are. Like any other couple they just wanted to be a regular family. Raising their children in the safety of their home. Sharing in the experience of seeing each child grow and develop into adulthood. They just looked forward to seeing each one achieve success individually as they grow together in the bond of family and tradition. In telling their story, Lucy says this:
“Breathing in that amazing new born smell, feeling that warm breath on your skin, counting them tiny little fingers and toes. We had just been handed our beautiful baby girl, after a complicated pregnancy, and nearly losing her during labor. Amelia was the final piece to our family. To look at her she was perfect in every way. Already having three young boys, we knew life would be busy but we couldn’t wait to start our life as a family of six.”
As stated in my last blog entry Jessica had the exact day that her daughter Nora was diagnosed etched in her memory. I think that has to be true of many families that face this journey. Lucy says it like this:
“On the 9th September 2014 Ollie had his first seizure.” and then later,
“The date the 13th February 2015, a day that will stay with us forever. I can remember the color of the walls, even the smell. As we sat in that small room with Ollie on his daddy’s knee we were told that our child has Battens Disease, that there is no cure and that life expectancy is between six and twelve years. Ollie was just four years old! Our world fell apart in that moment. We were told Battens Disease was so rare that they had never come across a child with it before.”
Not only would they receive this news about little doll man Ollie but their most beautiful little girl, Amelia, as well,
“For the second time our world fell apart as we learnt our beautiful princess also had Batten Disease. Amelia had only just turned two, she had been hitting all her milestones, to look at her you would never know. Walking out to our boys in the waiting room, trying to hold it together and act normal has to be one of the hardest things we have ever had to do.”
Above, Lucy's own words tell the story of the devastation that a parent feels when faced with the news that their child has Batten Disease. I have seen changes since the time I started following Ali. Clinical trials are starting to take place and they show some promise for the future. If only more attention was paid earlier. What a difference it would have made.
Both Ollie and Amelia are receiving injections of a drug called cerliponase alpha, and it is administered to children through a port directly in the brain in a 4 hour infusion every two weeks.
In an article released by the Batten Disease Support and Research Association.
(bdsra.org) the following statements are revealed:
“The data released shows that the process was generally safe and well tolerated by the children.” It also says, “When the data was further examined for the 9 children who have entered the extension part of the trial they suggested that the benefits have continued with children showing an improvement of 0.2 points at 72 weeks compared to an expected loss of 3.13 points.”
Even to this layman, that sounds very promising! When regular people do amazing things in the midst of a crisis, that catches my attention. That to me is Mike and Lucy. It is also the doctors and researchers that are in the fight to bring about a cure.
When I look at Ollie in the present through Facebook posts, I see this most adorable little floppy doll of a young guy. He has lost his ability to speak sentences but make the cutest sounds. He is just a beautiful little man. Lucy recently posted a video of Ollie kicking a soccer ball across the room. It was taken a couple of years ago. It together with the current videos tell the story of what this disease does to children. I have grown to love that little floppy doll of a boy, long distance, just as he is but I wish he was completely whole. Not as much for me as for his parents and family. My hope and prayer is that the treatments that he is undergoing will allow him to stave off effects of Batten Disease. I want him to be with his family for a long time to come. Beautiful little Amelia, I want you to kick Batten Disease right in the mouth!!
Like with every Batten parent I observe that seeks to spread awareness while they fight this monster, I become so impressed with the courage that they display. They do it for their own children and for all others that are effected. Lucy says it like this:
“Our time now is dedicated to spending as much quality time with all four of our children whilst raising as much awareness of Battens Disease as possible.” and “The most important thing now is to make every moment count. We don’t bother with our old worries and we will continue to fight for our children and raise awareness of Battens Disease. Every day that we spend as a family of six is a gift and we will never take this for granted.”
I hate Batten Disease, and all childhood disease for that matter. However, I love the families that have been affected by dealing with it. Mike and Lucy are doing an incredible work through Ollie's Army. Not that I am anybody of any great importance but this family has my attention. Ollie and Amelia you are both little Royal Rock-stars and little heroes too!
I'll be watching because they are my Royal Family. What? They are your Royal Family too? Oh, okay, if I have to share!
Please view the following links for more information:
Little Kaycee is another darling that is undergoing this clinical trial. She is receiving the injections that are are providing hope for herself and future little warriors like herself. Her mum, Claire Bradshaw is a really neat lady and a friend on Facebook. All my best to Kaycee and her family!!
And now, "To the one who made me aware and who changed my way of thinking. There is none like her, although there are many others.”
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. Let it happen!
I would like to welcome to my blog Sanfilippo families, as well as, families in other MPS communities. I am grateful for every opportunity to write about those who battle an MPS disorder. This, of course, alongside their special children. This is a labor of love that is extended to each one of you! Scroll down to see MPS family titles.
Highlighting a previous blog that might interest you:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
Take the titles listed below and go to month and year listed in the archives.
January 2017 -
*The Story Between The Lines
February 2017 -
*I Know Just Where You Are
*My Kind Of Royalty
March 2017 -
*The Caring Type
*Face to face: A Fairy-tale
April 2017 -
*No Ordinary Love
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story
June 2017 -
*Seth and The Healing
July 2017 -
*Little John and The Reason
*Sands and The Scottish Princess
August 2017 -
*A Rare Kind of Devotion
*The Giggle Box
September 2017 -
*Sweet Montanna and The Status
October 2017 -
*The Blog About My Blog
November 2017 -
*Lydia, I Love You!
*Kayden And The Change In Plans
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are
*Brock and The Priceless Memories
*Jamesy Boy and The Treatment
*The Priceless Princess From Beyond
*Forever Royal - Part One
*Forever Royal - Part Two
*That Kind of Love - Conner's Story
*What I See (She is a Butterfly)
*No Longer Alone - Kristiina's Story
*Things We've Talked About - Oscar's Story
*The Reason Why - Hannah's Story
*Kayla's Perfect Princess - Breanna's Story
*Where Do I Go From Here? - An information only blog
*Warriors Unaware - Mia and Kaleb
*Her Little Story
*Someone Like Raelynn
*Forever Royal - The Final Version
*Awfully Beautiful - The Life of Noah and Laine
*A Lifetime of Love - Tegen's Destiny
*Forever Beautiful - Gabi's Story
*The Miracle Baby - Amelia's Story
*Dylan's Life - A Small Town Story
*Princess Grace and the Challenges
*Anything for Tessa - Her Story
*Haley Bug's Battle - A Family Story
*Journey Unexpected - The Rich Family
Sanfilippo Syndrome and other MPS family titles -
*The Beautiful Light of Haidyn Grace
*Any Distance Traveled - Reagan's Story
*The Missing Someone - Kiernan's Story
Archives - Use title listed above with the applicable month and year.
Highlights from the beginning of 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
Larry - February 2017