My name is Shannon, and I am the lucky momma of an amazing little boy named Robert, but we call him Bubby. Bubby is 4 years old and a true blessing. After nearly 16 years trying to concieve, Bubs came into our lives, and our hearts were forever changed.
Shortly after he was born, we found out he had a seizure disorder. At this time he was having 25-30 seizures a day. These seizures were short, but many. At about 6 months old, he had his first status epilepticus, a seizure exceeding 10 minutes. To date, his longest status was 5 hours long. Each status he ends up in the PICU in an induced coma to shut his brain down to stop the seizure. He requires a ventilator to breathe for him. I can't begin to explain the fear we have when seeing our baby boy like this...wondering if he will make it through this one. At 2 years old, doctors made the decision to insert an implant called a Vagal Nerve Stimulator in hopes it would help control his seizures. Along with this device he currently takes 6 anti-seizure medications. Sadly, we still do not have seizure control; however, they have been able to get control of the status epilepticus. We have gotten some answers over the years. Bubby has Intractible Epilepsy and Ataxic Cerebral Palsy. Bubby has encephalopathy, which basically means malfunction of the brain. He has cortical dysplasia meaning congenital abnormality of brain development. There are many other terms, but they all mean the same...Bubby has malfunctions in his brain. Due to this, he has severe seizure disorder and has severe developmental delays. He is unable to sit unassisted, unable to crawl, stand, walk, and is non-verbal. Bubby needs 100% care for all his needs.
I do, however, want to share what Bubby CAN do. Bubs has this ability to draw people in with his adorable smile. Bubby loves and it is felt by all who are near him. He will touch your face and look into your eyes and make you melt. He loves to swim, and he loves to swing. He loves riding his bike (special adapted bike, most amazing ever!). Bubby loves music and fireworks. He loves chocolate milk and peanut butter and jelly.
We are trying to raise money for many reasons. Our home is not currently handicap accessible, and as Bubby continues to grow, it is becoming increasingly unsafe. We need a wheelchair ramp on our home. We need help with medical equipment that isn't covered by insurance. It is also getting very difficult to safely lift him in and out of his special needs carseat so, we desperately need a vehicle that his wheelchair can roll right into. We need an adapted bed for him; a bed that allows us to get him in and out safely and has rails so, he is safe while in it. Last, but certainly not least, we want to explore other therapies his insurance will not cover like ABM and hippotherapy. There's simply no way we could ever afford those, but after tons of research, we strongly feel they could greatly improve his quality of life.
Being able to do these things with the money raised will ensure safety for Bubs, while also allowing us to explore other medical options for him. We don't know if he will ever be seizure-free, but, just like any other parents, we want him to have the best quality of life possible. This means everything to us!
It is very difficult asking for help. I don't want people to see only what is wrong with Bubby, but everything that is right and beautiful, too. We don't want pity, only compassion. I hope you will help because you want to see Bubby thrive in this body he was given and not because you think life is hard for us. It is hard, but we recognize everyone is fighting battles. Bubby needs this help because he is extraordinary and, therefore, requires extraordinary methods to help him. He doesn't fall in the typical boxes so, what insurance covers isn't necessarily what works for him.
Bubby has changed our lives in an unimaginable way. Unconditional love. Love that words cannot come close to describing. Love for and by him, but also the love he has brought into our lives.
Thank you so much!!! Love from our family to yours!
Robert, Shannon and Bubby
Please help us by sharing this campaign on your social media pages. Thank you!
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In other news, thanks to all you guys, Bubby starts his ABM therapy this weekend! We are all so very excited for this opportunity and hope that it is the first step to getting our boy on his feet & bearing some weight! That is our biggest goal and we would appreciate prayers specifically for that because it is going to be a huge challenge for all involved, but we know that it is completely within the realm of possible. #operationbubbystands Hope you all have wonderful weekends! Love and light to everyone!
Tomorrow, Bubby & I were supposed to cross the finish line of our favorite race, the Katy Half Marathon, for the 3rd time, but that is not to be due to the race being moved for the Super Bowl; I already had plane tickets so, I am posting this update from Bubby's living room! When I got here, Shannon showed me this video she found on YouTube ( https://youtu.be/pPqFK97ecGE)...how sweet & cool is that?! Wish I knew who took it! :)
To top it all off, we got our class date to pick up our pup today! Hope you all have as good of a day as we have (if that's even possible)!
January 26, 2017. Today is special. Today marks the 5th anniversary of Bubby's official adoption day; the day that Shannon's and Rob's almost-20-year-old dream finally came all the way true! Five years ago today, two proud, new parents were busy making it officially official; he was THEIRS! They had loved him for almost a year by that time so, I bet it felt a little surreal to walk out of that courtroom knowing that their dream couldn't be undone no matter what! January 26, 2012 is also the day they found out Bubs has epilepsy. It was the beginning of a wild, chaotic, roller coaster ride through a plethora of seizures, doctors, hospital stays, co-pays, ambulance rides, tears, fear, disappointments, pokes, uncountable doses of uncountable medicines, specialists, batteries of tests, and "the system." And, yet, Bubby is still here. He is still here after being fully assaulted by those things since he was a few days old. He is a fighter, no doubt, but he also hit the parent lottery because Rob & Shannon have been in his corner fighting with and for him since day one. They have become medical experts that fluently speak doctor, which is equally impressive and intimidating, when talking to them about Bubby's multiple diagnoses. They tirelessly call insurance companies, medical equipment companies, pharmacies, doctors' offices, and therapists, and when those people don't return their calls or don't provide the correct form for the 20th time, Shannon calls back. It's maddening. Many others would have long succumbed to the craziness and gone insane themselves. And, yet, Shannon & Rob are still here. They are still fighting for their son for things such as basic necessities (diapers) to expensive medical equipment (bed). And for his rights to access any medicines that can help him. They fight for his quality of life and his happiness. His safety and comfort. This family of fighters was formed by God long before January 26, 2012, but they have been tested to the limits since that day and have come out with a stronger love than they knew possible. I hope you will all join me in wishing the Contreras family a very happy Official Gotcha Day today!
We are now seeing some second order effects from this campaign and it's pretty exciting! I'm sure everyone recalls that when the interview was taped and when it aired, the Contreras' family van was in dire need of some extensive repairs, which were beyond Rob's YouTubin' abilities. Thanks to so many of you reaching out with donations, we have been able to replace Bubby's van with a brand spankin' new one, but it gets better! Shannon and Rob were able to locate another local, special needs family and donate their van to them! I was so blown away by their desire to help someone else; I had only been thinking about trading the van in on the new one or possibly selling it to get a little cash out of it, but Shannon and Rob were a step ahead and came up with this awesome idea! The recipient family has two kids and this van will hopefully get repaired and have some useful life left to transport its new family around. Just wanted to share that little bright spot with everyone still following along out there. It goes to show that when people team up, many $5 donations can and do move big mountains! There were many people that gave hundreds, and some even thousands, of dollars, but far more gave in the $5 - $50 range and it has now provided transportation for not one, but two families! I think that's pretty amazing and a great reminder for us all to look for ways to pay it forward. Even when you don't have a lot to offer, everyone has something to offer and it can change people's lives more than you may ever know or realize. Love and light to everyone!
Saw this story on the news today. Amazing parents of a special needs child. God made a great choice in selecting them for Bubby. Their love and sacrifice for him speaks volumes! When you can count your blessings each day even under difficult circumstances you are truly blessed! Merry Christmas!!
I was only the 6th? person (-$500) to donate in the middle of the Fox News segment, I checked back about 45 minutes later to see the balance ($147,000) and I'm THRILLED my fellow Americans have huge hearts and given to this wonderful family! Cheers and Merry Christmas to all off you!
I wonder if this family is aware of "Charlotte's Web". This is a strain of marijuana (high in CBD and low in THC) thought to treat debilitating seizure disorders. Joel Stanley and his 4 brothers manufacture this strain of medical marijuana derived drug in Colorado Springs, Colorado. Please read the article on the CBS 'website of 2/18/2014 "Charlotte's Web"............ Just saw your story on FOX news. You are remarkable parents!!
My husband and I saw the segment of your story on FOX News. It truly brought tears to our eyes. Bubby is one lucky child to have wonderful parents who are amazing and loving. We prayed for you and my God Bless all of you. Praying that Bubby gets his illness controlled and hope he will love his new chair and new Van for his daily transport. Many Blessings.
I totally agree with the CBD comments. Please look up my friend "Amber Wann" here on fb. Her son Benjamin just reached the 1 year mark of being seizure free after using Charlottes Webb. It is CBD but DOES NOT get you high. Please like her fb page and talk to her. She is is a HUGH advocate for this. I will forward this on to her as well. My thoughts and prayers are with your boy and your family.
God Bless and I hope for the best for Bubby. Living today has given us medical miracles that we did not have even 5 years ago. Bubby will be remembered by everyone who has seen this story on Happening Now. Maybe with this publicity a well known neurologist can help with performing a miracle for you and Bubby.
I watched your segment on FOX News this morning and my husband and I were all too happy to help gift your gofundme account for Bubby. I work for a Christian based non-profit in Spring, TX called "Panther Creek Inspiration Ranch". As an equine therapeutic riding center, we work with children and young adults with unique challenges. We offer scholarships to families that face adversity and will never turn away a family due to their inability to pay. Please consider visiting our website and/or Facebook page to see if it would be convenient for your family.
So many of the people in the US have great, generous hearts of compassion and empathy. This is *not* virtue signaling... in contrast it is genuine care and concern demonstrated by action to help and assist another person as a matter of ethic and moral conscience. Bless all you who put 'shoe leather' behind your thoughts, concerns, and wishes for others - whether it's prayers, financial help, or some other form of assistance. *Bypass the bureaucracy - Bless others directly*