“Meeting Seth for the first time, was wonderful, but at the same time heartbreaking. Because I knew he was going to be going through the exact same things my grandson was going through. That night he was a little rambunctious, so I told him I was going to tell him a story: “this story is about a little boy named Seth”. He listened, as if he knew me forever, like I'd been telling him stories all his life. Such a very special moment.”
It should be no surprise by now to anyone that knows me. I love the kids that battle Batten Disease. My heart aches for these little warriors as they travel the road that takes them on a journey. I have fallen completely for these children and their families. If you give me your ear, that is what we will talk about. I know that there are other rare diseases that deserve my attention. All in good time.
Everyone who follows these families, tries to do their part as best they can. We all want to spread awareness about this monster named Batten. Some people are able to give financially to the families and to organizations that seek to help them. Some are in a position to work with people in government in possibly bringing about legislation that will help. There are, of course, researches that look for cures. They need the funds necessary to do the important work.
For all of us that follow the families through social media, we try to give encouragement to them. This is through kind words and by offering our prayers and positive thoughts.
The way I really want to honor these families is by telling their stories to the best of my ability. This is my contribution. Yes, it is most often true that these stories are full of heartbreak. But they are also filled with beautiful details of undying love for and dedication to these children. They show us the best of a person under the worst of circumstances. I am so moved by the details as I write.
This next story takes place in the state of Ohio in the United States of America. When you think about some of the significant places in this country, Ohio may not be the first place that comes to mind. However, It is an important place.
Do you love sports like I do? Well the cities of Cleveland and Cincinnati are huge sports towns. The Bengals and the Browns for Professional Football have a fierce rivalry within the state for people’s attention. You have the Cleveland Indians for Baseball and The Big Red Machine also comes to mind. That is the Cincinnati Reds, of course. How about college sports? Well, for one, there is the Ohio State Buckeyes. Their football and basketball programs are both legendary. Oh man! Did I forget something? How about those Cleveland Cavaliers? They were the 2016 World Champions in Professional Basketball and runners up this year as well.
Do you love music? How about Rock and Roll? Well Cleveland is home to the Rock and Roll Hall of Fame. Chuck Berry. The Beatles. They are all there!
Are you politically active at all? Such a distasteful subject these days but being part of the process is, if you will, a necessary evil. Here is a fact for you. No Republican candidate for the presidency has ever won election without winning Ohio. According to my reading, “Literally never, from Abraham Lincoln to George W. Bush, has an elected Republican president not won Ohio. Every time a Republican has lost Ohio, he has lost the presidency.” So if you aspire to be president, you definitely know where Ohio is!
So there are some big things going on in the big cities of Ohio, but there was something that was very significant to a certain family taking place in a tiny village in Ohio. The village of Nevada, Ohio is where a little man named Seth fought a battle of a rare kind. His life is very significant and it is connected to the lives of so many others.
Seth Alan Lee Dunford was born on September 6, 2008 at Galion Community Hospital in Galion, Ohio. He weighed well over eight pounds and although he would develop some jaundice, he was overall in perfect health. His mother Rebecca was overjoyed at his appearance into this world. Seth's little features were so perfect in every way and yes, he was delivered to the showroom floor complete with that new baby smell.
Life doesn't always happen in the way we would expect it to. And so Rebecca would start parenting little Seth as a single mother. She needed assistance, and when she did her mom, Crystal Alger, was there for her in a really big way. This story focuses on the relationship that would develop between Crystal and Seth from the very start. Raising Seth became Crystal's focus and reason. She would become his primary caregiver and Seth lived in her home. The bond between the two of them was instantaneous and real. It was very special. Although she was not Seth's mom, their relationship was like if she was. They had that type of special bond. Extremely close! As she would say, “He was also my first grandchild and my only grandson. The love between Seth and I was unmeasurable.”
Even a distant observer like myself can see all of Seth's personality in his early years. Looking at his pictures reveals the fact that he was a live wire. A real bundle of energy! Crystal said it like this, “Seth was a very active boy but he was very well behaved. He knew all his colors and numbers by the age of 3, he was potty trained, and was very outspoken. Seth was a bit advanced at his age and met all his milestones ahead of schedule.”
Anybody that has had a toddler, and then preschooler, in their house knows the pure joy that is experienced by adults as they observe all the tendencies of the little person that has been placed in their lives. It can be total escape from all the harsh realities that exist on this planet. If you are the one that is the caregiver, you get to experience every bit of it. All day long.
Rebecca, Crystal, and the entire family had no reason to believe anything other than that Seth's future was bright. He had his entire life in front of him. His quickness at reaching his milestones showed promise for a very bright future. This was not to mention the fact that he was so very adorable!
The family’s world would all change in almost a blink of the eye. In August of 2011 Seth started to show symptoms of a disease that is very rare. At that time, with his family on a trip to New York, Seth had what they would later realize was his his first seizure. At the time that was unclear. It was later, in November of that year, that he would have a seizure where he stopped breathing. The family called emergency responders at that time.
Seth was taken to Columbus Children's Hospital where he was diagnosed with epilepsy. In addition to the seizures, Crystal and the family noticed a loss of stability with his walking and he was walking on his tip toes at times. He then started running into door jams and falling a lot. They also noticed that he would lose skills with each seizure. He would regain them but not to the same level he was at before he lost each skill.
My son Benjamin has a seizure disorder that is controlled by medication. We were surprised for sure when he had his first seizure, but we knew that it was something that was inherited genetically. We had some family history to go by. For Crystal and her family things were different. She had no idea what was going on and why Seth was showing all these symptoms. There was no history in their family of any such thing. She put it to me like this: “I honestly was worried and confused. I had no clue as to why my precious grandson was having seizures, nor were we receiving any answers from doctors. They just kept saying he was epileptic, yet there is no history of seizures on either side of the family. All I wanted to do was "fix" him. And there just was no way I could do that.”
As with any parent or caregiver to someone that is dependent on us, we seek to fix problems when they arise because they can not mend on their own. What if we can't do that for them? If that is the case, we look for answers and help from others like which exist within the medical community. Seth would continue to carry the diagnoses of epilepsy with him all throughout the year of 2012 but Crystal knew in her heart that something else was going on with little Seth. She continued to look for answers and the doctors would go on to run more detailed genetic tests. Crystal told me that the doctor was hesitant to give her the proper spelling of the test because he didn't want her to be alarmed after doing a google search for her own information. She would find the correct spelling and search the internet anyway. The search was for a disease called Battens or Batten Disease. The information that she found in her search said that the initial sign of the disease was loss of eyesight. Seth had had his eyes checked just prior to the genetic testing. The eye exam had revealed that he had perfect eyesight. This caused Crystal to dismiss the possibility that Seth had the disease.
As with all the parents that I have talked to, Crystal remembers the exact day that she received the news of the diagnoses. It was January the 11th of 2013 that their world would fall apart. Seth had CLN2, or Late Infantile Batten Disease. She would tell me that her and Seth's mom Rebecca had a total emotional meltdown in the doctor's office as they received the news. What Seth had made him terminal. That beautiful and energetic little man had a disease for which there is no cure and which would take his life from them. As she told me, “We were in total shock and I think a bit of denial. We just wanted to believe that maybe just maybe the doctor was wrong. But as we know today they were not wrong.”
And so Crystal and the entire family began a journey with precious Seth that would bring many difficult and challenging days. She told me that the days with Seth became busy, stressful, and heartbreaking. With each passing day Seth's needs increased. In only a year and a half, he went from being a non-challenged child to one that is totally dependent on others for his most basic personal care.
As she put it, “All the preparation in the world could never prepare me for the things that were going to happen. The amount of suffering that sweet Seth was going to endure.”
I asked Crystal what she was feeling? Knowing what the outcome would be? She said that she did not live each day with the outcome in the forefront of her mind. She just wanted Seth to experience all the love and happiness that they could give him for the days that God gave them together.
As with most anyone that is confronted with such circumstances they often look for others that have shared or are going through their experience. Crystal was on Facebook one day when she ran across a page called Casen's Crusade. This would lead her to meeting Pamela Cameron who was Casen's grandmother. Handsome Casen had the same variant of Batten Disease and was further along in his journey at the time their friendship had begun. In previous blog articles, I have talked about what families within the Batten community mean to each other. How they lean on each other for moral support and understanding. How they hold each other up and exchange information. There is no friend like one who has experienced the same adverse circumstances as you have. What Pamela said to me speaks to this firsthand: “I believe we will always be friends, as we are with the others, because we are now family. Batten Families, we can call each other and ask candid questions about the disease, what to expect, what to do. Not a question we can't ask each other.” There really is a bond that exists because of a shared experience. Only the people inside the Batten community can understand one another at the level that they do.
Concerning how their friendship has developed and it's strength, these ladies have the kindest things to say about each other. Pamela puts it this way,
“Crystal and I became good friends, talking way into the night about Batten Disease and how it affects all of us, some in different ways. How our own feelings for all the children affected us.”
And in similar fashion, Crystal had this to say about Pamela and all the help she had been to her, “Pamela is truly a heart send. She was my calm when I needed it. She would always say when I asked her a question "are you sure you want to know?" Pam is down to earth and will hold no punches if you want the truth.”
You can imagine the constant source of help that Pamela has been to Crystal. They had been communicating ever since Seth was diagnosed.
I had talked about Pamela's own experience of caring for Casen in my blog article titled “The Caring Type”. Pamela is retired and recently lost Willie, her husband. She uses each day to follow and uphold other families that are affected by the disease. She is not just Casen's grandmother, but a grandmother to all of these precious children that have battled or who are still in the fight. As Crystal stated, Pamela will hold nothing back if you want to know the truth. She had shared something with me in a chat that I found to be startling but very forthright. She said, “Reality has to set in, but it's so very hard especially for the mom's of the child. The pain each day is the most horrible, looking at your child, knowing each day they die a little bit more. It's kind of like: Someone rips your heart out, throws it on the ground, but it's still beating, then they continue to stomp on it each day till it finally shrivels up and dies.”
I am glad that clinical trials are taking place and that there is progress being made although it is slow in coming. The Enzyme replacement therapy for CLN2 has a lot of people excited.
The importance of community can't be emphasized enough. Having each other to be a support and to share information is critical. One of the very best things that takes place are the Batten Disease conferences that are attended by the families. They are held in a different city each year. In the year 2013 the conference was held in Tennessee. That is when Pamela and Crystal met face to face. Up to that point they had been in constant contact over the phone and Crystal had received so much help from Pam. And that is also where Pamela met little Seth. The connection between the two was instantaneous. Pamela's impact on Crystal and the help she has been to her can't be overstated. Crystal told me, “We had been communicating ever since Seth was diagnosed, but we did not meet until our first conference in July 2013. Our friendship has grown and I thank God everyday for Pam.”
And you know what? I am absolutely positive that this type of thing occurs in the Batten community all the time. New bonds of friendship are forged through adversity!
Crystal has told me about the conferences and what goes on there. How the parents of children that have “gained their wings” will bring equipment and supplies that are no longer needed. How incredibly selfless and kind this seems to me. To be suffering the loss of your little person and to load all these items in your vehicle and head off to conference. This says something very powerful to me. There is one example that I want to share with you.
In February of this year (2017), I did a blog post that I titled My Incredible Story – Revisited and Revised. Within that article I talked about a lady named Linda Crain and her son Kane. Kane had Batten Disease and fought the disease with honor and dignity. Kane was so very adorable. He lost his battle with Battens but he gained a great victory. An eternal one. This was in the summer of 2014.
Get this! Three days after Kane's funeral, his mom Linda showed up at the Batten conference with Kane's wheelchair. She gave that chair to Seth.
I asked Linda about the experience and this is what she said, “I really enjoyed snuggling with Seth that weekend. It was 3 days after Kane's funeral. Everything had changed in an instant. They were similar in age and appearance. I read Seth Kane's favorite story about Goldilocks and The Three Bears and he laughed just like Kane did. Very bittersweet.” Crystal would tell me that she was told by Linda that getting to hold Seth that weekend helped her heal just a little bit.
Lately, as I write, I have a bit of a moment emotionally when I find myself being touched by a part of the story I am writing. It happened this time when I thought about the generosity of these grieving families and Linda's actions in particular. I just recently learned from Crystal that Linda is a nurse by vocation. I can only imagine that the care that people receive from Linda is of a special quality. Do they know who she is and what she has been through? Linda maintains a Facebook page in honor of Kane and she uses it to spread awareness about Battens. It's called Raisin Kane for Batten Disease. She does an incredible job!
Each one of these children's lives impacts other people lives. As we follow each one of their stories through social media, our lives are changed because of theirs. As for myself, following these kids has changed my way of thinking. They have taken away some of the anger and self-centered thinking that I once had. I will, however, always be a work in progress.
We refer to these children as warriors because of the battle that they fight with this monster. They give it everything that they have to give with every ounce of fiber in there little bodies. As it was with Kane and Casen, so it was with Seth.
At the end, Seth was totally bedridden. He was tube fed and required suctioning several times a day. Crystal gave him vest and breathing treatments. She administered a host of medications around the clock. In addition she did diaper changes plus baths. He was totally dependent for all his needs. Also, because he was unable to communicate verbally with Crystal, she had to take cues from him as to what his needs were. As an example, she said that kicking walls meant that he needed to be turned. “If he cried which was not often, it usually meant he was getting sick. His cries were more like a painful whimper. Then I had to figure out the problem.”
Crystal stated that, “there really are no words that can describe the bond between a special needs grandchild and a grandmother.’” It’s my belief though that it is out of the ordinary for a grandmother to show the type of devotion necessary to take care of a Batten child. Crystal’s actions demonstrated no ordinary love!
Crystal believes very strongly, as I do, that all these precious children have a special eternal home awaiting them. However, when the time was drawing near, Crystal felt that she would like to have Seth baptized by her Parish Priest. That seems special to me! She asked if Pamela could be Seth’s Godmother. Pamela of course said yes and she shared the following sentiment with me: “I was surprised and accepted with honor for Seth. Couldn't have been more proud. Both Crystal and myself being grannies, have a special bond. It was brought on by the love of two children who never got to meet, till they were both in God's hands.” In a very sad but moving turn of events Seth would be whisked away to his eternal home as he “gained his wings” only fifteen minutes after his baptism was completed.
Crystal said that Seth suffered from several different lung infections and ultimately that is what took him. The emotions surrounding the event are certainly understandable. She said that she went out on her porch the Friday before he passed and yelled at God " if you want him just take him! Please don't make him suffer like this". The Monday when he passed she yelled at God one more time, " why did you take him." You know what? God understands...
Pamela speaks from experience and she would tell me this, “The loss of a child is endless pain, it does not get better, you only learn how to hide the pain a little better each day. Family, friends, shy away from you, afraid they might mention something that will make you cry or hurt you, but all we want to do is talk about our loved ones.”
Pamela creates a set of angel wings for each child whose family desires to have them. She speaks about the children in this way, “they are in my heart forever. Makes no difference who, where, they are from. My heart breaks every time I have to make a set of Wings. Crying is a thing I've learned to hide very well. I must stay strong to be able to honor these children. All parents go through the same thing, some had to do this multiple times. Such a horrible disease.”
The empty house is something that I have mentioned and thought about frequently. Most of Crystal’s words fall directly in line with the type of comments that I have heard from the other parents. “Very lonely, devastating. You think losing them is the hardest. But the quiet is really the hardest. You surround yourself every waking moment taking care of him and then he is gone.” She thought to herself, “Now what am I to do. It is not my time to join him.” Yet that is all she wanted to do.
Crystal would go on to say, “I was very angry with God following losing Seth, but after my stroke it made sense. God took him to safety before my stroke. After all I am unable now, due to the stroke, to properly care for Seth.” Sometimes trouble comes in bunches. Doesn’t it? Crystal seems like a very determined lady and I wish her well in everything!
I often times think about the character building process that must take place as a result of losing a child. I think about the inner strength that must accompany the heartache. The character quality that must come as a result. Does that brokenness lead to extra kindness towards others? I bet it does. I think about how my hardest days pail in comparison.You know what? There are lots of people out there that would love to trade my hardest days for theirs. And you know what else? This is a reminder to myself. Be kind to people because you never know what they may be going through.
The healing on this side of eternity, comes only in part. I have been told that the wound never heals completely. If there is anything that helps, maybe it is taking action on behalf of these little warriors. Doing whatever it takes to spread awareness and trying to bring about change drives just about all of the people that I have talked to. As mentioned before, Pamela maintains the Facebook page Casen’s Crusade. She also holds fundraising events locally in the great state of Texas, where she lives. The proceeds go directly to families fighting Battens. She does so many other things for people that it would be difficult to mention all of it. She lives to do her part and she does her part very well.
Crystal works with other ladies in fundraising through the Facebook group called Batten Angels. Money is raised that goes directly to families who have just lost their little warriors to this dreadful disease. Seth’s page is called Seth’s Fight 4 Peace.
To little Kane, and Casen, and Seth,
Your little lives matter to me in the biggest way. Thank you for all you are doing for me.
It is true that only those of you within the Batten community can understand each other's grief and experience the way that you can. However, it is also true that you all can be loved and appreciated by those of us on the outside. And so you are!
Crystal, job well done dear lady!
I have never done anything as important as this!
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...