Our story

It is hard to imagine what any parent would say about their children who are suffering from a horrible illness. But I will try to convey to my thoughts, feelings, and facts. In the fall of 2009, Sebastian had his first seizure while we were on vacation. We had no idea what was going on, we thought just a long travel day filled with excitement! later we discovered he had a tonic-clonic seizure mixed with partial complex seizure. He was hospitalized and then told to see his doctor. After another one some months later, Sebastian was diagnosed with epilepsy, and he was prescribed anti-convulsion medication to control his seizures. It took a long time to figure out the right mix of medication and during this period, Sebastian’s seizures were increasing to twice a week. Also, the length of time during the episode was going past the 1-2 min time. He was also getting very hurt from the falling due to the seizure too. So sad! Many days spent in the ER ...

Within the next year, we noticed some behavioral changes in Sebastian, but we thought it had to do with a reaction to the medications...Sebi seemed to be the poster-child for side effects for all medications! If there was a warning on the label, Sebi had it! But there seemed to be something else going on...

We noticed that Sebastian was having trouble seeing and reading. So we took him to the eye doctor at UCLA where he was diagnosed with Retinitis Pigmentosa. We had no idea what this meant? Sadly they told us that Sebastian was losing his vision and eventually would go blind very soon or by the time he was in his teens. They just couldn't say when. We were scared and needed answers. So our neurologist at UCLA suggested Genetic testing. What with Sebastian having seizures, going blind, and now losing some cognitive functions we had no choice. What came next destroyed our family....

He was diagnosed with Batten CLN8, a fatal and degenerative neurological disorder. A scientist explained that this was a rare disorder that had no cure and would leave Sebastian blind, in a wheelchair, without the ability to eat on his own, speak and be dead by his late teens or twenties.

Well, we had to keep pushing forward and we would not accept that death sentence for our son. Who would?? There must be other families out there who are going through this right?? So we searched the web and found others too who had different kinds of Battens Disease and we started connecting through FaceBook and began to educate ourselves. This is a horrible disease with no cure and there are so few of us that research is non-existent. Then we came across the Charlotte Gray foundation. They have two daughters who are diagnosed with Battens Disease as well. Just a different version...They have CLN6 and Sebastian has CLN8. After contacting them and having lunch we were told that they were doing something! They had put together a genetics team to develop a gene replacement therapy for children suffering from Batten CLN6. They are the first family to do Gene Therapy Replacement. Their daughters have both received the gene therapy over a year ago and are now on their way to rebuilding their lives. It was so amazing to hear this news and they have invited us into the trial. We are so fortunate to have met them. However,  because this is new and so expensive it is not covered by insurance. So we are here to raise the money necessary to treat Sebastian and other children diagnosed with Batten CLN8. Pretty simple....lol

Unfortunately, I got divorced in 2012, but we remain diligent in our mutual goals with my ex-wife in helping and finding a cure for Sebastian. No matter what. We have another son named Gage who is 12. He is quite possibly the best little brother on the planet. He is so helpful and loving towards his big bro. But let's be honest...there are times when they just go at it!! All is fair in love and brotherhood right!? My ex has re-married and now has a beautiful daughter and Gage and Sebastian love being big brothers to such a cutie. Yes, a blended family that can come together no matter what. With all of this sadness, there is hope. Sebastian and other children may have a chance a full life with on-going clinical trials that may save lives. However, the price tag is an enormous $3-5 million per trial. Please donate today to help Sebastian and the future of all kids have a fair chance to live.

Contact Us

25688 Alicante dr.

Valencia CA 91355


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