This is Jimmy he is 26 years old and was born with a rare one of kind chromosomal abnormality. Jimmy was born full term and healthy overall, just different. He was super small and has stayed supper small. Jimmy's diagnosis causes him to have what they call growth retardation, he's never been on the growth charts, and he never will, so he will stay the size he is, under 5 ft and less then 100lbs. Jimmy has the mentality of a 3-year-old, and he's physically the size of a 12-year-old. Let me give you a little background on Jimmy. At birth Jimmy was 5 lbs 9 oz, at 9 months old Jimmy weighed just 12 lbs. Due to that, they admitted him into the hospital for failure to thrive and to make a long story short, he had a Feeding Tube placed. At 2 years old Jimmy went into Kennedy Kreiger (KKI) outpatient feeding clinic to try to learn how to eat properly and eventually have his feeding tube removed. At 4 years old Jimmy was admitted to Mt. Washington's outpatient feeding clinic and sadly failed that one as well. I continued to work with Jimmy and eventually had him off his feeding tube and drinking his supplement diet by mouth and exploring some table foods. Primary sweet treats but at least it was oral food. Jimmy went 3 years not using his G-Tube, we were so excited and looking to have it removed when Jimmy was hit with another diagnosis. Jimmys hips did not developed right, and he was in need of a Bilateral Femoral Osteotomy. I will spare you the google search and tell you that means they had to break both his femur bones and add in hardware to help his hip sit in the hip joint properly so he could walk without pain. This was a rough surgery, and Jimmy could not walk for 6 weeks afterwards. Sadly, he was on pain medication and muscle relaxers around the clock, so that G-tube came in handy. Jimmy started his PT to learn to walk again 6 weeks later and he was doing good for a few months, then he started complaining of pain. Back to the OR to have the hardware removed (this is normal it only stays for 6-12 months) Sadly at his preop I noticed his arm involuntarily moving. So, I took a video and sent that to his doctor who said it looks like he's got a tick starting. Great just want he needed another medical problem. Fast forward 2 years and we find ourselves finally in line to see a neurologist (that's not an easy appointment to get). Well, 2020 came with Covid and the world shut down in March. Jimmy had his fist appointment with the Hopkins/KKI neurologist (now virtually) in April. That was challenging because she couldn't see him well or examine him. She did however have a possible diagnosis but wanted to get some labs first. The next day Jimmy had a virtual appointment with his GI. She took one look at him and said I need a weight NOW, do you have a scale. Well, we put him on the scale and learned that he was 25 lbs less than he was 6 months before. We had no clue, seeing him every day he looked the same to us. So off to the hospital (Siani) we go, he was admitted for failure to thrive again. With Jimmys original diagnosis he is a high risk for several different types of cancer. So, his GI had one big fear, so lab work was necessary. Jimmy did not handle this admission very well; no medication they would give him would calm him down. He flipped tables, and he beat me up pretty bad, and sadly due to Covid, Dad couldn't come to help me, we were locked in his hospital room alone and couldn't leave the room. He felt fine and had no clue why he was there. After 3 very long days and several emails to his new neurologist and having her work with a neurologist at Siani. We received yet another new diagnosis and this one was the toughest one of them all so far. Jimmy developed a neurological condition called Generalized Dystonia. The Dystonia caused to much movement that he was metabolically burning calories even in his sleep. Over time the Dystonia has caused Jimmy to lose his ability to walk, he has loss control of his right leg, and it has caused his torso to twist, so he can't even stand up straight, and he can't stand at all without some kind of support. Jimmy also has muscle spasms in his legs. Sadly, all the medications we tried for it didn't help and/or Jimmy couldn't handle the side effects. Eventually we ended up having to put a baclofen pump installed. This pumps the muscle relaxer Baclofen straight to his legs, so no side effects. This has helped with the pain, but sadly Jimmy doesn't sleep for more the 4 hours at night. So, it causes me to not sleep for more than 4 hours. He's asleep by 8-9 pm and up at midnight until about 7-8 am. Some nights he's up till midnight and back up at 2 am. Nothing we do has changed his sleep pattern. We have tried so many medications and NONE of them work, because he fights it. Sadly, Dystonia causes seizures and now Jimmy is dealing with myoclonic seizures. So cameras are a must to keep an eye on him.

I've done some research and discovered a sleep safe bed. Sadly, when you put the word special needs on anything it quadruples in price. A bed for him is roughly $4,000-$6,000 dollars

I was looking to raise funds to help purchase things to help make Jimmys quality of life so much easier. Sadly, lack of sleeping has caused him to miss his favorite recreation (Horseback riding). Staying up all night causes you to crash during the day. Finding grants is not easy and funds from the state are not easy to get. They have an excuse all the time, they keep asking if someone else is eligible to pay. Jimmy has a state program he is in, and they have sent people out to give estimates on our home to make improvements for Jimmy. Sadly, we can never get pass the 3 quotes. The request keeps stalling and expiring and we have to start over. Jimmy can stand with help but won't use his walker. I would like to have bars put in his room so he can hold onto them and walk in his room independently. Jimmy has a psychiatric diagnosis of social avoidance; he is super independent and that can make things very hard to help him. Just like an independent 3-year-old toddler. They can do it themselves, but they do it wrong or take forever. Yup that's everyday life with Jimmy.

We have carpet in our home, and we have gotten estimates to have it replaced and I know you know that's a big-ticket item. Since Jimmy can't walk, he crawls around the house and the carpet makes it hard on his knees and the tops of his feet as he drags them. He has laminate flooring in his room, and he has a stool he can slide around on and it helps him get around without crawling. If the whole house had flooring like that he can move around the home much easier.

Also, Medicaid use to pay for his incontinence diapers for 2 years then out of the blue decided they didn't like his primary insurances denial code that they have been using for the last 2 years and stopped paying so now every month we pay $104 for adult diapers for Jimmy. I've made phone calls to Medicaid, and they blame BCBS and BCBS blames Medicaid, and Jimmy is left without.

Jimmy loves to go camping, but sadly campgrounds are not all handicap friendly. So his wheelchair doesn't always travel well through the campground. I would like to get him a jogger stroller that can go "off-roading" and not risk throwing him out of the chair when his front wheel gets stuck on a rock, or a patch of grass. Well one that can hold him again has the word special needs on it and it's almost $2,000. I can ensure you that all funds that are donated to Jimmy will go to Jimmy and his needs to help adapt his world to his needs.