Santino is in dire need of a proper hospital bed

Hey all! First, I’d like to start by saying; thank you for reading, sharing, praying, contributing in any way. All thoughts and prayers are always welcome, and if you are unable to donate, please share. If you know me, you know all about my Brother Santino. If not, details on his diseases and care will be below.

Before I post the medical information, I’d like to explain why we are fundraising. As you will see from below, Santino gets round the clock medical care from his Upstate, NY home (I, the poster reside in MD, and want to state that to avoid any confusion) and it’s almost solely given by my Mom. While she will probably unalive me if I shared her age here, I will say she is getting older now and all of his care is taking a toll on her, especially with all of her own health issues to deal with and having to lift Santino, whom I’m sure you can guess is all dead weight. She was donated an amazing hospital bed years ago by some beautiful people and that suited all of her needs. It has since broke after years of use and was replaced by an insurance paid bed which SUCKS! It’s fragile, unpredictable, not trustworthy and all around makes his already tedious care more difficult for my poor Mom. So we are trying to raise enough money to get another bed that will help her give him the proper care he needs and help make it easier on her. Between the movable frame, specific mattress and delivery fee total will be just under $8,000.

-Spinal Muscular Atrophy Type one diagnosed at 6 months old through a DNA test. Gastrostomy Tube put in at 9 months old when he lost his ability to eat anymore.

-Idiopathic Peripheral/ Autonomic Neuropathy and Dysautonomia diagnosed in 2015, tracheotomy done in 2017 first time he was ever intubated which led to him having seizures due to the medication they had him on. At this time he was not able to breath adequately with the bi-pap he needed a ventilator. 2019 he ended up with chronic pancreatitis and Cerebral Cysts.

-He is on a ventilator 24/7, gets oral/nasal suctioning along with in-line suction for the Trach constantly. He does not have a gag reflex so he uses a cough machine to bring up deep secretions.

-He has a kangaroo Joey feeding machine which gets hooked up to his g-tube in his stomach. He has slow motility so his nutrition is mainly through his PICC line where he receives his TPN.

-He has a humidifier hooked up to his ventilator to keep his secretions thin and easy to remove. He also has a oximeter which alerts us of his oxygen and heart rate levels.

-He wears AFO’s and hand splints 3 times a day to limit him from getting extra contractions and allowing the contractions he has to not get any worst.

-He gets repositioned every

2 1/2 hours from his right side to his left side to his back. He gets a bath every day. He has z-flow pillows which are great for repositioning his legs, feet, hands, arms, neck and back.

Thank you from every part of my Mom’s and my being for reading and contributing in any way to help us reach our goal for this special guy ♥️♥️