Bubby's blessings

Hi ya'll! My name is Shannon and I am the lucky mommy of Robert aka Bubby. Bubby was adopted at birth after 16 years of trying to have a child on our own. He is truly a gift!
Shortly after we brought him home we found out he has epilepsy. As time went on his seizures got worse and lasted longer, longest was 5 hours. We now know he has intractable epilepsy with recurring status epilepticus. This just means uncontrolled seizures that don't respond to medications. Status epilepticus are seizures that exceed 10 minutes. His last for hours requiring hospitalization in induced coma. He also has Ataxic Cerebral Palsy. Bubby is 100% dependant on someone for every need. He is unable to sit unsupported, stand, walk or talk. Caring for him is full time just with appointments for specialists and all his therapies.
There are many things insurance will not cover, including some of his medications and adaptive equipment. Its hard asking for help however we want quality of life for him and that means asking for help.
Thank you so much for reading his story! Love from our family to yours!
Shannon