The entire experience began for Sandra Garrett in this way...
“...his page popped up in my news feed and I instantly fell in love with him. His beautiful blue eyes and porcelain like skin was just pure perfection. I followed CASEN'S CRUSADE daily from then on as this precious little one brought such joy to my life and I truly adored him.”
After a few months, it became very apparent to Sandra that she had a strong desire to meet Casen and his family in person. She would find a way to make it happen. As she continued to follow Casen on his page, her relationship with Pam Cameron, Casen's grandmother, began to flourish. As a result, she sought the opportunity to ask if she could meet them in person.
“I knew in my heart of hearts that he was very real and I wanted to meet him and touch him and just see him for real.”
Sandra recounted her reaction to meeting Casen as we spoke while Skyping. She talked about how it was for her to travel the distance and to see Casen for the first time in person. How the family was so appreciative of her coming the distance to meet Casen. But what did it mean to her? To see him in person after viewing so many of his pictures while reading all the details of his daily life with Batten Disease. She talked about how it was love at first sight after stumbling upon Casen's page.
There is nothing like the experience. It is wonderful to follow these kids long distance and it seems like each person has one that they fall in love with in a special way. For Sandra, and many others, that little person was Casen. At the top of Casen's journey, he had nearly seventy thousand people that followed his page.
I have said it before but there is power in human touch. To actually be there in the same room and be present with a rare child that you follow brings it to a whole different level. This is something that Sandra and I have in common as we have both experienced it. For Sandra, being able to place her hands on Casen and to tell him in person how much she loves him was a life changing experience. She puts it like this:
“Lying next to him on his bed on my 50th birthday was the most precious moments of my life. To run my fingers through his beautiful hair and to stroke his porcelain like skin and kiss him and tell him how very brave he was is something that stays with me forever.”
Those of us who follow children that have rare and fatal diseases are drawn into these stories in a similar fashion. It often times changes our perspective and focus in life. I know that it has in my case. How does Casen's story begin?
This particular story really begins like this: In the great state of Texas no less!
Casen Michael Cameron was born January 15th, 2007. He was born a normal, healthy child and he looked so perfect in every way. He had all his fingers and toes, plus he was delivered to the showroom floor complete with that new baby smell!
His parents, Corey and Chandra, looked at him with great expectation for what his future would bring. But they were not the only ones that were excited about receiving little Casen into the world and into the family. Papa Willie and Granny Pam were ready to love on their new little grandson and to give him everything that grandparents have to offer. Papa Willie, especially, had thoughts of the time that they would spend together in the great outdoors.
Casen's parents were busy people. They both worked hard to keep the household they had established going. This gave Pamela a good opportunity to spend time with Casen and he quickly became the center of her attention. She stated it like this:
“After Casen was born, me living within a few blocks of my son, I asked to watch Casen while they both worked. My son was a Smith County Sheriff Deputy, Casen's Mom Chandra, worked for Lowes. They were both gone many hours between them. I am always home, nothing to do, so taking care of Casen before his diagnosis was really nice, we got to spend lots of time together. Played in the yard, went to the lake. Casen had a riding tractor he loved, would ride all over the place, was the best toy we ever bought. He also had a battery operated 4- wheeler, omg, was so much fun to watch him ride.”
And so the old adage that says you are suppose to “spoil them and send them home to their parents” didn't apply to Casen. He spent a lot of time with Willie and Pamela. This created an inseparable bond between them in addition to that which existed with his parents. Casen was a very busy and happy little guy. Everything was good in his little part of the Lone Star State. That was until November 2009, just shy of Casen's third birthday. That is when he had his first seizure. He was rushed to the hospital but the doctors were unable to find any problems. He was released and sent home with orders to see a pediatrician.
And then on Christmas Day of 2009. That is when Casen would have a total of three seizures. He would have one at home and then one at the hospital. The third one took place as he was being released. The ER doctor would recommend that Casen be taken to Children's Hospital in Dallas to consult with a pediatric neurologist.
Can you imagine what this must have been like. To have this happen on Christmas Day. The anxiety that it would cause in his family.
Future testing would include EEG's, CAT scan's, MRI's, and blood withdrawals. Casen was placed on seizure medicine. When the seizure medicine didn't work, it was changed.
Without the family knowing what was happening, Casen began to exhibit all the signs of having a rare and fatal disease that they probably didn't know existed.
While visiting the hospital, it was determined by a social worker that he was not progressing like a normal child with his speech. He was not reaching milestones of development as expected. Casen was enrolled in Elementary School where Casen's teachers worked with him through the rest of the school year. Some improvement was seen and it provided some hope, however, towards the end of the school year, Casen quit walking on his own. The doctor thought it was the combination of medicine he was taking. Casen's speech began to lessen. He went from using three word sentences, to just using one word.
A second neurologist was consulted and she ordered a muscle biopsy of Casen's thigh upon learning that he had quit walking. The results were forwarded to Casen's primary neurologist and the entire family was asked to meet with the doctor. On June 21st, 2011 they were informed that the cause of Casen's seizures had been found. The doctor informed them that Casen had Late Infantile Batten Disease.
When I read stories like this, a recurring question always comes to mind. The question is, what is it like to be told by a doctor that your child or grandchild has a terminal disease? That the disease is rare and there is no hope? What was it like for Corey and Chandra to learn the news? Pamela and Willie had to be just devastated. In fact, they were:
“Just before his third birthday, he started having seizures. Then came the diagnosis, Batten Disease. Our world fell apart. Casen was always such a happy lil guy, always a smile on his face. Loved to ride and be outside. We had a very close bond, and he absolutely loved his papa. I spoiled him so bad, but loved every minute of doing so. After being diagnosed, I continued to watch him, I didn't want anyone else to look after him, didn't think we'd find anyone to look after him as well as we could. I went to every doctors appointment, read everything I could find about Batten Disease.”
The family started Casen's Facebook page and began to do fundraising to help insure that he had everything that he needed. Together they began the same journey that far too many families take. Batten Disease really isn't that rare.
Pamela was not a nurse by vocation but you might have thought so by the way she cared for Casen while in her home. She said that her cabinet looked like a drugstore. My understanding is that this is common in households where a child with Batten Disease is cared for. Although intimidating at times, each parent does whatever is necessary to help their child stay in the fight and to battle on. In this case it was Casen's Granny Pam! I just know that she did an incredible job.
I've talked about it before. The strength of the bond that is created between two people when you care for someone that has special needs is unparalleled. When that child has a rare and incurable disease the bond increases almost exponentially because of the constant attention and the heartache that the situation creates. Pamela absolutely adored Casen.
“Casen was the love of our life, we were so devastated at the diagnosis, we'd have given anything in the world to have been able to change the disease. Spending weeks at the hospital each time he was admitted, was hard to watch. Never really knew if we were going to make it through this or not, but he was a fighter. Knowing each day was a gift. My heart broke, being a granny, I couldn't fix this for him. I'd have given anything.”
Unfortunately, Corey and Chandra's relationship suffered the same fate that many do and so they separated. You know what? Life happens! Because of this Casen's mother moved away. This left Willie and Pam with only having Casen every other weekend, extended time during holidays, and in the summer.
“My heart hurt he wasn't right here by our side at times, but what ever it took, I was always there.”
Towards the end of Casen's life, Pamela told the kids they had to make plans for the end. Again, she took the helm as she wanted them to be at peace knowing everything was in place for Casen. Although I am just getting to know Pamela, I know what type of person she is. She is the Caring Type. This heartbroken granny always did what was necessary for the well being of Casen and her entire family.
Pamela recounted the families final days with Casen in this way:
“I just knew how bad this was going to be on all of us. We had spent a week or so in the hospital, they told us to call family together, he wouldn't make it through the night, even the doctor spent the night, and our lil guy made it. The next morning, they said they felt like taking him home is what he was waiting for. So we did, and he made it for a couple more days.“
“The final day, he was having so many seizures, they kept him on phenobarbital, and comfortable. I think everyone we knew came by to say their goodbyes, all family were there, we told Casen it was okay to go with Jesus. We all understood, we knew he was so tired of fighting and needed peace. He closed his eyes and took the Lords hand and went. Nothing in the world could have prepared us for that moment. My world was swept away.”
Casen lost his battle with Batten Disease on April 23,2014.
Each child that that faces Batten Disease will gain their wings. My desire, along with many others, is that this changes sooner than later. The teal colored angel wings that each child receives symbolizes freedom. These wings symbolize freedom from a body that no longer functions as it should. Freedom to fly away to an eternity without pain or suffering.
Pamela would face the additional challenge in the passing of her husband Willie in January of this year. My understanding is that Willie had been ill for a while and his leaving was somewhat expected. That doesn't lessen the pain of losing the person you have spent your adult life with. Pam has told me that she receives comfort from the fact that Willie and Casen have been reunited. Casen loved Papa Willie.
She is very active in the Batten Disease community. Pam maintains Casen's page for spreading awareness and creates the wings and ribbons for each child that passes. She also does fundraising which goes directly to Batten families that are in need.
I have no doubt that she relives the experience of dealing with Casen's disease and his loss with every new child that she follows. (I don't think that the pain ever goes completely away.) You see, she's a granny to every child and young adult who has Batten Disease. She is amazing and she is there for them!
As for Sandra Garrett, she traveled more than half way around the world to meet her little Batten Warrior, Casen. This is a testament to a couple of things. For one thing, it testifies to the transforming effect that following a rare child can have on a person. It also testifies to the kind of person that Sandy is. She put it like this:
“Meeting Casen did lead me to follow other Batten Babies as I felt that traveling to the other side of the world was not going to be something that I did in vain. I then needed to support and love all the precious children and families that are afflicted by this hideous disease so I made it my mission to ensure that this happened.”
And so, it has happened. These kids are her passion. Sandra is my friend and fellow advocate. Not only that, but we consider her to be part of our family. However, it's only because Pamela is willing to share her with us. I am so happy to know that both Pam and Sandy are my friends. This community is full of amazing people and both of these ladies are no exception. You see, they are the Caring Type. Chances are that you are as well!
To the parents of these rare children, I have to say that you have no idea what you and your kids mean to us. Then again, maybe you do!
My heart breaks. This is my passion and my purpose...
He's from the great state of Texas but don't look for him there. He's out spreading awareness to all who would care. I know that you care!
Just type in Casen's Crusade into your browser on Facebook to view Casen's page!
Highlighting a previous blog that might interest you:
Journey Unexpected - The Rich Family
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the pieces and will yourself to do your very best. A love that is profound and a bond that is stronger than any other is formed. Two little beauties in one family is two, too many but you seek to make a difference! A journey unexpected...