“Meeting and holding Tyrell for the first time. It was the greatest moment of my life. My first born grandson. The moment I saw him I felt the most unexplainable love in my heart. He was perfection and so beautiful.”
It was Mother’s Day and we happened to be at church. They most often times play a short video for special occasions such as was the case that day. They showed the faces of smiling children and mothers in different stages of a child’s life. It just portrayed the enjoyment of the bond that is shared by a mother and her child throughout their development. All the little faces growing into maturity. That is how it should be. There is however, hardship in every person's life along the way. Of course, some families face difficult challenges that others will never see. Some are forced to take a journey that they would not wish on anyone else. That is the way it is for a family that faces Batten Disease.
Why am I passionate about these families? Certainly, there are other subjects to talk about. What attracts me to their stories? I am by nature a sensitive and passionate person. When it comes to causes, I am either all in or all out, with nothing in between. My emotions get stirred up when I think about the details of each journey and what it is like to go through it. The challenges faced, financial and otherwise, and sacrifices often made. The determination to do the absolute best for each child. The undying love that is shown. These families have become my rock stars because of all that they go through. The love and pure devotion that I see in them towards these children.
This next story takes place in the country of South Africa. In Cape Town nonetheless. You can see that it is a beautiful place. Even from this distance, with the help of technology, you can tell that Cape Town and South Africa as a whole, has a lot of natural beauty. The region in where Cape Town is located is rich in natural resources. It is also rich in history and many have traveled it's coastlines by ship. I am no history major but when I think of Cape Town, a movement named Anti-Apartheid comes to mind. When viewing tourism websites for Cape Town, I see stunning shoreline views and attractive urban settings. Yes, it looks like Cape Town is a beautiful place but it is also the place of a beautiful story.
Gino Arendse and Jade Harker met in high school in 2007. They quickly fell in love. You see Jade caught Gino’s eye as he found her to be extremely attractive. Gino's own good looks were complimented by his raging sense of humor. He made Jade laugh as soon as they met and his ability to do so is still his trademark today. They would discover that they had so much in common.
Their initial love for each other turned into a relationship that lasts. In fact, they recently celebrated ten years together. They love each other every bit as much and more than when they first met. From the beginning, they had plans for a family. Their desire was to raise up three children into adulthood. They wanted each one to be strong and independent, as well as, successful. Gino and Jade promised each other that they would always be together, no matter what. And so, that was the basis for them wanting to start their family.
Tyrell Jaden Arendse was born to Gino and Jade on March 10th, 2010 at Karl Bremmer Hospital in Cape Town. He was Jade and Gino's first born son and he was so perfect in every way. It was after midnight when the nurse handed Tyrell to his parents but the time didn't matter to them. Time stood still in that moment as they gazed upon that perfect little creation. Gino's words as he held his newborn son were simply “Wow! He is so so cute” He was adorable!
Life was good for this young family of three. Both Gino and Jade were employed and enjoying their life together with little Tyrell. Their family would soon increase in size as Jade was expecting a new little brother for Tyrell. They were absolutely excited that their family was soon to increase in size. All was going according to the plan that they had set for themselves. Little Tyrell loved playing soccer. His parents had seen how much their son enjoyed it and they planned on encouraging him in this area. Gino would tell me: “Due to his passion for soccer, we always intended on investing in his passion and to send him to a school that's sports orientated in order to excel in his passion.”
Gino and Jade's joy was multiplied by two as they soon welcomed into the world another beautiful baby boy. Tristan Margino Arendse was born on November the 13th of the year 2013. Both little Tristan's parents, and all of their family were overjoyed with the birth of Tristan. Among them was Gino's mom, Jo-Ann, who was very close to Gino and Jade. As one would expect from such an attractive couple, little Tristan was just beautiful to behold. Everything just seemed so good at that moment. And in fact, it was!
Tristan's first days at home were so busy but things were good. However, one week after the family brought him home his big brother Tyrell started to show symptoms of a disease. The family had absolutely no idea what was taking place with Tyrell. They had no idea at the time but they were at the very beginning of a journey that they would take together. This journey is experienced only by families who's children have Batten Disease. It is a very rare disease occurring in an estimated 2 to 4 of every 100,000 live births in the United States. It is more common in other parts of the world, however it is still a rare disease. The disease occurs only when a child inherits two copies of the defective gene, one from each parent.
Can you imagine what that must have been like for this young family? To go from experiencing the extreme joy of welcoming a new baby into the world to the utter bewilderment of not knowing what was taking place with with big brother Tyrell?
As would be the case with most any family, Gino and Jade sought the help of the medical community there in Cape Town. Things became very hectic and frustrating as they sought after answers for what Tyrell was experiencing. As with most any child that begins with this disease, that would include seizures. As is always the case, the search for answers begins with misdiagnoses. The medical community as a whole is not educated well enough to know what they are dealing with at the disease's onset. After all it is rare.
Tyrell's grandmother Jo-Ann was very much involved with the family and Tyrell's journey from the very beginning. She loved them all so much and was very close. She, along with Gino and Jade, had to deal with the initial frustrations of not knowing what was happening. As Jo-Ann would tell me: “When Tyrell became sick, well it was not easy. That I can say. To see Tyrell having the most unexplainable symptoms of some kind. Not knowing what's wrong with him. Then the seizures started, which was the most horrific experience ever. Hospital, in and out. Doctors saying what they thought, at the time, what was wrong. Answers that didn't make sense at all.”
I take it from reading Jade's comments that the majority of healthcare is provided by the government in South Africa. That can often times lead to an inability to provide everything that is needed to deal with such a disease. This is in part what she would tell me: “South Africa. Its a beautiful place. But the government is not that helpful and useful. That's why its important to have medical aid here. Government hospitals are terrible. You wait hours, days, even months to get helped. Service is very poor..... Some medication the government gives, but not everything. Also, the medical system does not cover everything which means you end up paying for the stuff. Medical supplies is also a fight to get paid for.”
Tyrell would eventually receive the diagnoses of Late Infantile Batten Disease (cln2). As is the case in all children with this variant of Battens, Tyrell would experience having an alarming amount of seizures.
Tyrell started having Grand Mal seizures when he was three years old. The doctors did testing and noted that he had an abnormality in the right side of his brain. They also had put him on medication. He then started having seizures up to ten times a day. No medication helped. He would go on to have three types of seizures, Myoclonic seizures, Grand Mal, and Absence seizures.
Jo-Ann talked about what it is like to witness this as it was taking place: “I can remember when he was with me one day whereby he had like seizure after seizure. That day I kept him in my arms crying out to God, why God why? It was the most emotional moment in my life watching my grandson having these seizures....and here I am helpless (unable to help).”
The family would in the course of time receive the official diagnoses. I have now read many of these stories about families and their reactions as they receive the news. It always involves a young mother. Sometimes a father. Sometimes the story is about a grandparent's response. I mean, how do you go from having a seemingly healthy child in front of you to having one that is very sick with symptoms that leave you confused and disheartened. The news leaves you totally despondent. Your child has Batten Disease and there is no cure. It's fatal. You can try to control the symptoms but the disease will not go away.
Jo-Ann would put it like this: “It was very heartbreaking when we eventually got a diagnosis to his condition. That day when Jade phoned me to tell me...that's the day our families world changed completely.”
Jade says that her and Gino's reaction was that they were very very sad.
“We just burst out crying when the doctors told us and there is no cure. We sat and cried because we knew Tyrell would never live the same life again. The little loving energetic boy would become bedridden like he is now.”
How does Jade describe the journey? “omg I don't think there is even words to put it out there. It's the most cruel disease known to kids. It steals their childhood and then their lives. Its very sad that our son won't ever be normal again and play with his friends and brother. It was the biggest shock to us and heart wrenching feeling. This has been so tough for us a family.”
Like most families that have to deal with rare diseases in a child, it can bring some very serious circumstances with it. Gino and Jade have been through much. As was previously stated the health care system in South Africa has not been adequate when it comes to providing for all of Tyrell's medical needs and the family has incurred expenses. At one point, the couple and their children were actually evicted from their home because they couldn't pay their rent. I know that it is possible that they had some help from friends and family along the way, but it had to have been difficult nonetheless. On top of that they had at one point lost their jobs because they had to be at the hospital so much. Their employers just didn't understand what it is that they were going through. This seems heartless to me. They had to sell out things like cars, their wedding rings, and television sets just to survive and pay for items for Tyrell's health needs. Throughout all of this, Gino and Jade have stayed strong together. They are still very much in love with one another.
I was at work when I initially looked over Jade’s comments about their experience. I could feel myself getting emotional as I read her words but it was only during a short break that I glanced at them. I composed myself and went back to work. Later that night I was home with my special son Benjamin as his mother had gone to the store. At that time, I was able to read in detail what she said the family had been through. Eviction, sale of things as important as wedding rings to pay medically related bills, loss of employment. That is when it just got to me and I really just lost it for a while. I learn of more stories that are filled with similar heartache as I continue to write. A short while later, I was with my son in his room, having brought him a snack and I bear hugged him as I most often do. This time, however, I hugged him extra tightly. It happened to me again as I was writing this article. I think that is why I continue to do this. I really need to get into a different line of work.
Gino and Jade are gradually getting back on their feet as Tyrell continues to do battle with the evil monster named Batten Disease. As Jade put it, “We have now found a flat that a lady was willing to rent out to us, so we are thankful for that. And, we got jobs again and are trying to find our feet slowly, again.” They both now work for a logistics company.
I don't think that the family would be able to survive if it were not for the help of Tyrell's grandmother Jo-Ann. She provides the care that is needed when Jade is not home and also when the couple needs a break. I think that she must seem like an angel sent from heaven. In fact, This is what jade has to say: “She is a blessing to us and we thank God for her. When Tyrell started getting very very sick and we had to work she offered to care for him. She takes great care of him and is a big help. She loves him dearly.”
There are of course others that bring encouragement. Jade goes on to say, “My parents, my mom and dad, come and visit Tyrell and love him dearly also. He is very loved by his grandparents and so so so many people out there. Everybody he meets says he left a mark to stay in their hearts.”
Taking care of Tyrell has been a challenge for Jo-Ann, however, I am sure that it has been a blessing as well. I'll let her tell you in her own words: “Honestly it was not easy at the time when I made this decision because I wasn't sure if I'd be able to do a good job. I just asked God for his wisdom and guidance on how to care for Tyrell. It has not been easy. Long nights of stay awakes, always making sure he's comfortable and good before I close my eyes to rest. Nights where he has difficulty breathing, and then there are night after night whereby he can't shut down. I then talk to him a lot, sing to him, telling him stories, and reminded him of things he used to like doing.” “Although he can no longer talk, he reacts with his eyes when you talk to him. I always make sure that he feels loved and cared for and I won't change a thing. Caring for Tyrell...he's my strength and inspiration in my own life.” She reminds me of a couple of other extra special grandmothers that I know.
As for the little warrior named Tyrell, He continues to battle the evil monster named Batten Disease as he takes this journey with his family. His seizures are for the most part, controlled by a combination of three medications. They are Epilim, Urbanol, and Toplep. He does, however, have a tough time breathing. His family does everything they possibly can to keep him comfortable and happy. Tyrell is seen by three hospitals. Tygerberg hospital by Professor Van Toorn. Milnerton medical clinic by Dr Poole. And, Paedspal Palliative Care by Doctors Tracey Nupen and Michelle Meiring. He is just such a handsome young guy and he is so deserving of all the attention he receives.
Tyrell is one of only two known cases of Batten Disease in South Africa. The other Child's name is Jaden and he has a variant of Batten Disease which is called Late Infantile, cln8.
It is such a difficult journey for each of the families that have a child with Batten Disease. Some have to go through the experience more than once. The challenges become greater as the journey continues. All these lives are cut far too short. Progress is being made but for these families, it is painfully slow in coming. As far as these kids are concerned, none of their little lives will be lived in vain because of the impact that they have on their families and those of us that follow them. The way that they show us how resilient they are and the lessons that they teach us. These stories may all seem to be so tragic and, to a very large degree, they are. However, the lessons that are taught about complete love and sacrifice are to me unparalleled.
My hearts desire is to see a cure for Batten Disease. Clinical trials for at least two of the variants are taking place. Availability needs to be worldwide. Increased awareness is happening but much more needs to be done. I write these stories in order to honor the families. It's my small part and a privilege that I don't take lightly.
For Gino and Jade, things will not be as planned but this love story will continue. Tyrell will always live in their hearts and will be with them in spirit. Tristan will always have his big brother looking out for him. I have only just met Jo-Ann but I am so impressed and she has instant credibility with me for the way that she is caring for Tyrell. God Bless you Jo-Ann, Gino, Jade, and your entire family.
Be strong Tyrell and continue to do battle. You, one day, will have your reward.
I have never done anything as important as this.
Make sure that you visit Tyrell's Facebook page if you don't know about it already.
Tyrell"s fight against Batten Disease
Jade has an uncle that resides in the state of Ohio here in the USA. He has a pay-pal account that he keeps to help with Tyrell's needs. if you would like to help with Tyrell's expenses, you can do so by sending money through pay-pal to the account and it will be sent to the family. Here is his account: Louie@RedKeyProductions.com
I have set up a public Facebook page that is related to my blog. I hope that you can go to it and hit like!
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...