Little Batten Warriors Mia & Kaleb
Donation protected
On June 11th 2009, we welcomed our second daughter Mia. A perfectly healthy 7 lbs 1 oz baby girl, huge brown eyes, rosy cheeks and full pink lips. Mia developed normally, met all her milestones and even met some early. She was walking at 7 months old! Mia loved to sing and dance with her big sister Jaylen, she enjoyed to color and help bake. She also really enjoyed her mommy and me gymnastics classes every Saturday morning. Mia is our little ray of sunshine, she brings joy with her 100 watt smile on the darkest of days. She's our silly, happy, free spirited yet strong willed child. We never had concerns for Mia's health until she had her first seizure on January of 2013.
Kaleb was born on July 8th of 2010, a perfectly healthy and plump 7 lbs 8 oz bundle of joy. His sisters welcomed him with lots of hugs and kisses, they were so happy to have him as part of our family. He was so hairy, he sported a mohawk minutes after being born. Kaleb was and is the epitome of a mommy's boy, wherever mommy was, there was that chunky baby boy too. He is the happiest, sweetest, most caring and loving little boy I have ever met. Kaleb's development was right on track, with the exception of a speech delay that we noticed shortly after he turned a year old. We were advised that he will catch up and not to worry so for that time we did our best in trying to get him to communicate and taught him a couple signs. At his 2 year check up we pushed for a developmental evaluation and it was then determined that Kaleb had a speech delay. We immediately started therapies through the early intervention program in our area where he quickly picked up several signs and a few words. Things were going well until he had his first seizure in January of 2013.
At first we thought that it had to be environmental, why would our perfectly healthy toddlers have seizures within weeks of each other with no underlying cause? No one in both sides of our family has ever had a seizure. Needless to say, we were terrified. Little did we know what was lying ahead because those seizures threw us into a whirlwind of events. Numerous labs, scans, tests and 48 hour EEGs determined that Mia and Kaleb both had epilepsy. We hoped and prayed this would be something that they would outgrow as we learned to live with it. We came to terms with that diagnosis but breakthrough seizures and the fact that they are siblings had our neurologist wanting to do further testing. We had genetic testing done in August of 2013 but nothing could've prepared us for the results we received.
On November 14th 2013, we got the genetic testing results in. Relieved to finally have answers to what was happening to our children but devastated by what it was, our world came crashing down on us that day. It is called Neuronal Ceroid Lipofucinosis or the Late Infantile form of Batten disease. That day we learned that our children's seizures will worsen, that they will continue to lose all of their abilities; including the ability to talk, walk, eat and their sight. It is a progressive neurodegenerative disease and the worst part is that there isn't a cure for it, not even a treatment.
Batten disease happens when a child receives two copies of the defective gene from each parent. The body of a child with Batten disease lacks the enzyme responsible for clearing the waste out of the cells, that results in waste build up and the cells dying. Which lead to the loss of skills and sight. Batten disease occurs in an estimated 2 to 4 of every 100,000 live births in the United States. Batten disease is always fatal.
Learning that this is our children's fate and that there is absolutely nothing we can do about it is beyond devastating. So many things crossed our minds, for instance what will we tell their older sister Jaylen? How will this affect her? What are we going to do? We still don't have all the answers, all we can do is give them the best life we can while they are here with us. We have to squeeze an entire childhood into a few short years as best we can.
All we want is to give our children the best life we can possibly give them, we want them to enjoy all of their days and be happy. This year we hope to purchase a wheelchair accessible van, give our children a fun summer and enjoy the little things in life. We appreciate any contribution, whether it's a dollar, a prayer, a share or an uplifting comment.
Be sure to follow Mia & Kaleb on Facebook and Instagram, you can search for us under Little Batten Warriors
Kaleb was born on July 8th of 2010, a perfectly healthy and plump 7 lbs 8 oz bundle of joy. His sisters welcomed him with lots of hugs and kisses, they were so happy to have him as part of our family. He was so hairy, he sported a mohawk minutes after being born. Kaleb was and is the epitome of a mommy's boy, wherever mommy was, there was that chunky baby boy too. He is the happiest, sweetest, most caring and loving little boy I have ever met. Kaleb's development was right on track, with the exception of a speech delay that we noticed shortly after he turned a year old. We were advised that he will catch up and not to worry so for that time we did our best in trying to get him to communicate and taught him a couple signs. At his 2 year check up we pushed for a developmental evaluation and it was then determined that Kaleb had a speech delay. We immediately started therapies through the early intervention program in our area where he quickly picked up several signs and a few words. Things were going well until he had his first seizure in January of 2013.
At first we thought that it had to be environmental, why would our perfectly healthy toddlers have seizures within weeks of each other with no underlying cause? No one in both sides of our family has ever had a seizure. Needless to say, we were terrified. Little did we know what was lying ahead because those seizures threw us into a whirlwind of events. Numerous labs, scans, tests and 48 hour EEGs determined that Mia and Kaleb both had epilepsy. We hoped and prayed this would be something that they would outgrow as we learned to live with it. We came to terms with that diagnosis but breakthrough seizures and the fact that they are siblings had our neurologist wanting to do further testing. We had genetic testing done in August of 2013 but nothing could've prepared us for the results we received.
On November 14th 2013, we got the genetic testing results in. Relieved to finally have answers to what was happening to our children but devastated by what it was, our world came crashing down on us that day. It is called Neuronal Ceroid Lipofucinosis or the Late Infantile form of Batten disease. That day we learned that our children's seizures will worsen, that they will continue to lose all of their abilities; including the ability to talk, walk, eat and their sight. It is a progressive neurodegenerative disease and the worst part is that there isn't a cure for it, not even a treatment.
Batten disease happens when a child receives two copies of the defective gene from each parent. The body of a child with Batten disease lacks the enzyme responsible for clearing the waste out of the cells, that results in waste build up and the cells dying. Which lead to the loss of skills and sight. Batten disease occurs in an estimated 2 to 4 of every 100,000 live births in the United States. Batten disease is always fatal.
Learning that this is our children's fate and that there is absolutely nothing we can do about it is beyond devastating. So many things crossed our minds, for instance what will we tell their older sister Jaylen? How will this affect her? What are we going to do? We still don't have all the answers, all we can do is give them the best life we can while they are here with us. We have to squeeze an entire childhood into a few short years as best we can.
All we want is to give our children the best life we can possibly give them, we want them to enjoy all of their days and be happy. This year we hope to purchase a wheelchair accessible van, give our children a fun summer and enjoy the little things in life. We appreciate any contribution, whether it's a dollar, a prayer, a share or an uplifting comment.
Be sure to follow Mia & Kaleb on Facebook and Instagram, you can search for us under Little Batten Warriors
Organizer
Barbara Elizabeth Diaz
Organizer
Orlando, FL