My name is Summer Allmon, and I am the Grantor and trustee of Robert "Bubby" Contreras's third-party, irrevocable, Supplemental Needs Trust (also known as a Special Needs Trust). All proceeds raised through this site will be held in Bubby's Trust and will be used only for HIS direct benefit and needs, which are not covered by Supplemental Security Income (SSI) and Medicaid. Examples would be modifications to make his home wheelchair accessible, a wheelchair accessible van, Anat Baniel Method (ABM) therapy, and other things that would contribute to his quality of life, but are not covered under any insurances or state/federal programs.
Now that you know how your generously donated funds will be administered, please take a moment to read this message from Bubby's mom, Shannon: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
All Money Raise Bout This Post Will Go To https://www.gofundme.com/bubbystrust
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