Urgent Support for Sebastian's Medical Needs

Hi my name is Ariel and as many of you know, my son Sebastian has special needs. He was diagnosed with PVL in the nicu and later diagnosed with cerebral palsy. Last night, he was sent to the hospital. He was in so much pain that he wouldn’t stop screaming no matter what I did. But he can not tell me what’s wrong. I rushed him to the hospital but they also couldn’t figure out what was causing his distress and sent us home on medication for his stomach. A month ago, his scans revealed something abnormal, and his gastroenterologist had him under go further testing.

A month ago Sebastian was dropped from his insurance for no reason. I was told “someone dropped the ball” and that is when our world truly started to spiral. We lost all of his therapies and his home health aid that has been with us for 2 years as well as his social security disability. I had to scramble to find childcare immediately or I would lose my job. I then had to explain the situation to my job. They have given me until January 3rd to figure things out, but I’m not sure how much longer I can keep this up. I’ve been working late into the night, often passed midnight, just to make ends meet for my children and me—but it’s not enough.

Sebastians medical bills are beyond anything I could have imagined. I can’t even bring myself to open that bill when it comes. A few months ago he was admitted into the icu for 5 days, and he had surgery 2 months after that. He will need more surgeries in the future, it’s only a matter of when.

I hate to even ask for help but I am desperate, but I’ll do whatever it takes to keep a roof over my children’s heads and pay for Sebastian’s medical care. He’s outgrown his leg braces, but since he has no insurance, he can’t get new ones. He desperately needs a TLSO which is a back brace, a special walker a wheelchair special diapers and food because he is bery unweight that there is talk of a possible G-tube placement for him. He desperately needs these things but I’ve called and gone everywhere I can think of and morning has worked out besides someone kind enough to give me an older wheelchair but it’s a 5 hour drive from me.

Now ontop of everything else I am about to lose my job. they have told me I need to be back in the office just January 3rd, and because I’ve missed so much work for Sebastian’s appointments and emergencies, I don’t know how I can manage it all. I’m only one person. We are on the brink of homeliness—-just 1 month is all it took for my world to fall apart. I’m trying to pick up up the pieces but I’m downing and breathing through a straw.

I’ve called every shelter (if it comes down to it) but they are all full. I’ve spent more time on the phone and in person at the social security office and the department of children and families than most people will in a live time. I haven’t stopped trying to fight for my family. I wake up take care od the kids, start work, manage their bedtime routine then work again into the night only to do start it all over again at 7am (while being woken up numerous times throughout the night)

Ive worked so hard for everything that I have, and to see it all slipping away in just one month is breaking me. It’s breaking my heart for my children. Never in a million years did I think this would be my life, but here we are. I am embarrassed, scared and incredibly tired. I can not lose my job because it is what’s keeping us afloat right now, but if I don’t get help that’s exactly what is going to happen. I’m doing everything I can but nothing seems to be working. My world has just shattered in the last month, and I don’t know what else to do. I’m writing this on my lunch break and have no other time.

it’s hard to believe that in just a month, my entire life has been turned upside down. But I will never never give up. I will keep trying for my children even if that means sharing our story with the world.

jd you’ve made it this far thank you from the bottom of my heart. Even if you can’t donate please share. Every penny will go directly towards Sebastian’s medical bills and the bills I need to keep roof over my children’s heads.

Thank you again for reading this and I hope you all have an amazing holiday season and new year ❤️