Bring Joseph Back to His Loving Family

Help Bring Joseph Home.

Samantha, mother of three special needs children, Serena (11), Dante (13) and Joseph (15), all diagnosed with autism and ADHD, and her family need your help.

Joseph is a 15 year old currently enrolled in the PTECH program at BOCES in New Hartford, an accelerated early college program for high schoolers that allows them to graduate high school with technical job skills and an associate’s degree. An amazing achievement for Joseph, as not only does he suffer from ADHD and grade 3 Autism, but he has needed to overcome adversity no child should need to face.

In 2022 Joseph had a catastrophic and life-changing medical event. He experienced a stroke, could not speak, could not see out of the borders of his vision, part of his face drooping and a loss of function on one side of his body. All the typical symptoms you would expect. Luckily, he was home and was able to get his family's attention, so they were able to quickly get him to an emergency room.

When they arrived at then St. Lukes Hospital emergency room it was discovered that he had an exceedingly rare medical condition known as an AVM, arteriovenous malformation, in his brain that had ruptured causing the bleed. The doctors advised the family that there is a specialist in Buffalo, Dr. Adnan Siddiqui, a neurosurgeon at Buffalo hospital in connection with Oishi Children’s Hospital, who was a pioneer of the specific surgery that would be needed to save Josephs life. They were transported immediately from Utica to Buffalo.

Joseph went through over a week hooked to IVS, getting scans, all kinds of neurological tests, and brain surgery to save his life. Glue and four coils in his brain repaired the bleed, leaving him with limited function on his right side, and after several days of recovery including a mishap with a blown vein from an IV and a lot of painful swelling, Joseph was able to go home to his family.

The recovery was long and difficult, but after weeks of physical therapy and occupational therapy, Joseph was able to regain mostly normal function on his right side, he could run again, play baseball again, play video games, he started pickup up the guitar, and after being cleared by a neurologist even played football for Clinton High School.

At the beginning of July, as Joseph was attending a job skills program for kids with special needs at MVCC, it became obvious that he was facing mental and emotional challenges. He was no longer thinking clearly, was having difficulty expressing himself, and after about a week of very steep decline started hearing voices and hallucinating. Josephs sentences no longer made sense or were not words at all. His eyes no longer focused on things around him. Other than very brief moments of clarity, during which he would beg for help, he was still in there but he didn’t know how to help himself or what was happening.

Samantha brought him to the ER who sent him to Ellis Hospital's inpatient psychiatric facility. There, he was isolated from his family, save for potentially two 10-minute phone calls a day and given rapidly escalating doses of antipsychotics without his mother's permission. He was there a week with minimal medical assistance before being discharged, over medicated and still out of touch with reality.

The family spent this time in the facility doing their best to make his room more welcoming. Painted video game characters on his walls, hung photos of friends and family, put messages of support and love on the walls, but when he came home he wasn’t even able to process what he saw. Over the next few weeks, they spent time trying to get his medications right, the anti-psychotic he was on was spiking his blood pressure and giving him feelings of impending doom, making him have anger outbursts, and had ruined his appetite. Eventually an ER doctor advised Sam to take him off the medication, and while he was doing better as the meds cleared his system, a new problem started...

The doctors have been referring to his current episodes as catatonia. He stops whatever he’s doing, stops walking, stops talking, just stares blankly ahead with his mouth agape. You can see that he’s there, tears form in his eyes, he mouths words or opens his mouth to scream, but nothing comes out. In and out of ERs and being told by every doctor that nothing was wrong, that he needed time, that he needed to breath, eventually he ended up at Golisano Children’s Hospital in Syracuse.

MRIs, CTs, EEGs, a spinal tap, countless blood tests, scans, so many tests later and all we have learned is that nothing is wrong. Save for him having lost over 20lbs over the last month, and he was skinny to begin with, Joseph has nothing physical that any doctors can identify as a problem. We know he is experiencing psychosis, hallucinations, hearing voices, catatonia, and we know it's likely related to his autism, and possibly his brain surgery, but we don't know why. He has been ruled as needing another psychiatric inpatient stay and is now checked in to Upstate Medical University’s psych department. Another isolating situation, though thankfully this time it does seem the department has more staff, more expertise, and is more invested in his case. Joseph is autistic and even when he is clear he doesn’t know what’s going on or where he is. He needs to be home, he needs to be surrounded by love, he needs his brother and sister, his parents, his friends. Unfortunately his current mental and physical condition is making that impossible.

Joseph has lost much of his physical function. His hands are weak and shaky, his walking is unsteady, his vision lacks perception of reality, and most importantly his mind is no longer fully processing his surroundings during episodes. In order for his family to be able to bring him home when he is released from the facility, their home will need a variety of accessibility upgrades, this is where they need help.

His bedroom needs to be completely remodeled for safety purposes, he will need accessible fixtures, tamper proof outlets and switches, smoother and safer walls, ceiling and floors. A lot of little imperfections in the wood walls and trim of his room that were not a problem when he was in his normal physical and mental state are suddenly dangerous. The hallway outside of Joseph's bedroom is the same story, coupled with a required relocation of the bathroom door as it is too close to the current stairway, making it easy to slip down if he loses his footing when opening the bathroom door. A new wall blocking the stairway is required to prevent falling over the railing. The home is old and the stairs themselves are extremely steep and will be difficult to climb safely for someone with limited function. A safer landing will need to be installed at the top with a gate into the hallway to prevent unintentional falls. Finally, the bathroom needs to be made accessible, a walk in shower/tub with a handicap door and shower bar, safer tamper proof fixtures and outlets, a safer window, safer walls with no imperfections or sharp corners, a sink with sensors so it’s easy to turn on and impossible to leave on.

All of this, coupled with the myriad of expenses associated with the very frequent emergency room and hospital stays, medical, medications, food, parking, gas, tolls, loss of work time, and the future needs of all of the above and likely at home care from medical professionals, Joseph's family is over extended. They need help if they're going to be able to bring him home.

We’re asking for $35,000 to complete the renovations needed for their home to make it safer for him to live with his loved ones, and cover the cost of additional expenses that insurance hasn’t and won’t cover. If they are unable to raise enough to make Joseph's home accessible for him, they will need to find him a group home to live in, and there is nothing any of us want more than for him to be home and loved, for all of them to be together, and to help bring him back to a new normal again.

The future of Joseph's family depends on your generosity. Please help this family.