The LuckyStrong Wheelchair Accessible Vehicle Fund
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*For every day updates on Lucky's journey through the milestones and struggles of life you can follow him on Facebook at Lucky Ball The Fighter.
The purpose of this fund is to get Lucky into a Wheelchair Accessible Vehicle. Right now we have a 1999 Dodge Durango with no AC and in Las Vegas AC is essential. Lucky also sits in a normal car seat. As Lucky gets older, bigger, and heavier it gets increasingly harder to get him in and out of the car seat safely. We want to get Lucky into a Wheelchair Accessible Vehicle so we can safely transport him. We would be able to wheel him right into the vehicle and lock him down. We would no longer have to put him through the stress of taking him in and out of the wheelchair and car seat multiple times per trip. And, unfortunately, as Lucky gets older his health problems have increased and so have his appointments.
Before you make a decision let me tell you a little about our son Lucky. He was born at 24 weeks and 4 days gestation. He weighed only 1lb 11oz and was 11 3/4 inches long. He was given less than a 1% chance to live and we were told that we should take him off of the ventilator. He was born with multiple complications including a grade 4(the worst) bilateral(both sides) brain bleed which caused hydrocephalus (swelling around the brain). He had both lungs collapsed and he flatlined all within the first 24 hours. He also had a hole in his heart that was fairly large which caused his oxygen saturation to be very low. In plain terms, his body was not getting enough oxygen and he had to be connected to a ventilator for months. As a result, he received PDA Ligation surgery which put a titanium clip on his heart to close the hole. He also went through two bouts of NEC, necrotizing enterocolitis. A horrible condition that can cause the babies insides to liquefy among other things. Both times he had NEC the doctors told us his chances of surviving the night were very slim and that we should probably say goodbye and both times he pulled through. Lucky is a strong little guy and his nickname is The Fighter for good reason. Lucky spent 98 days in the NICU but thankfully we were able to bring him home in November of 2015 just in time for Thanksgiving.
Remember the brain bleeds I told you about, well we knew Lucky would have problems later in life due to the brain bleeds but at that time there was no way to tell the extent of the damage. Lucky is developmentally delayed, blind, has brain damage including missing part of his Septum Pelicidum (the membrane that seperates the 2 hemispheres of the brain), has motor function delay, is wheelchair dependent, has grade 4 level 5 Cerebral Palsy, a feeding tube and a rare form of Epilepsy among other rare diseases and disabilities. It's going to take a lot of work and many years before he fully catches up if he ever does, but we have high hopes. He is getting therapy to help with his low muscle tone issues and his lack of fine motor skills. Lucky also has a condition called Tortacolis that affects the muscles in his neck, shoulders, and back. Because of his preemie status and Tortacolis, he can't hold up his head or sit up yet and is completely wheelchair-dependent. Lucky is also blind, but his eyes actually work. His optic nerves are essentially dead because the brain bleeds and none of the images ever make it to his brain. Lucky also has a VP Shunt in his brain. It drains the extra water in his brain due to Hydrocephalus. He will have that his entire life. It's implanted on the skull but under the skin and it has an 8-10ft tube that goes under his skin, down his neck, then weaves its way through his body to drain into his stomach. He also has Plagiocephaly, which is basically a flattening of a side of your skull. He wore a helmet to help correct that, but experienced a regression after the helmet and suffers jaw issues which may require corrective surgery in the future. Our goal is Lucky's safety and development. Lucky qualified for Nevada's Katie Beckett Medicaid because of his preemie status but has since been dropped from Social Security and normal Medicaid. We now rely on all State programs. A child with as many disabilities and rare diseases as he has including CP and being blind should never lose government-assisted insurance. We just want to be able to get Lucky around safely.
Thank you for taking the time to read our story. If you'd like to be a part of Lucky's journey through life please join his Facebook page, Lucky Ball The Fighter.
Thank You and always stay LuckyStrong,
The Ball Family
Organizer
John Ball
Organizer
Las Vegas, NV