Funds For Hope
Donation protected
Hello all! Welcome to our campaign, I know a fair few recognize this hunk of mine and what he's been through in 8 years, but if you don't let me tell you! Nicholas "SuperNic" is an incredibly sweet boy with some very severe outcomes all due to medical malpractice and neglect during childbirth. To give a rundown, Nic's head was crushed with forceps during delivery because the "dr" didn't feel like like doing an emergency STAT c section. As a result of this SuperNic is diagnosed with Grade 3 HIE (Hypoxic Ischemic Encephalopathy) (oxygen deprivation causing brain damage) Level 5 Spastic Quadriplegic Cerebral Palsy, GERD (Gastro - esophageal reflux disease) Stage 3 VUR (Vasecteoiretral Reflux) (bladder reflux to both kidneys causing kidney damage) Severe seizure disorder, Clonus, Chorrea, Nystagmus, Hypoplagio encephalopathy, severe torticollis to the right (muscles so stiff in neck that it turns the head to a one sided resting position that causes a "flat head"), Central sleep apnea (stop breathing during sleep / obstructed airway issues), immunocompromised (severely weakened immune system thus causing heightened sucepitability to infections) dysautonomia (inability to regulate body temperature thus causing severe dehydration/ heightened seizures with a lower threshold) Nic is non verbal - meaning he cannot talk. Nic is non mobile - meaning he cannot walk and relies heavily on adaptive equipment as modes of transportation. Nic is non oral - meaning he cannot eat by mouth (Exclusively Gtubed for life) and the list goes on and on of diagnosis'. Because of SuperNic's severe medical issues he does have a prognosis of life expectancy. 8-12 years minimum, 12-15 years maximum. In the current 8 years of life, Nic has had well over 200 surgeries and that number will continue to grow. When I first started this campaign my goal was to raise funds so Nic could do stem cell therapy, but because of Nic's diminishing health and the advisory boundaries in which Nic can travel (North America ONLY) we've had to drop that idea. Cons outweigh the Pros too much that could cost Nic his life. Our goal is $10,000.00 and here's why. Anyone with a special needs child will understand this one too! Nic's in dire need of equipment. Over the years I've applied to multiple funding and charity agencies to be told that my son's diagnosis' are not permanent disabilities. Now wait a second! Hold the phone! Brain damage isn't a disability?? HAH! (Let me know when you hear of a SUCCESSFUL brain transplant! ... you won't, because they don't exist!) specialized equipment takes a toll on any family. Mountains of paperwork, only partial funding, and in our case in Canada, if certain organizations are in place/ or if you already own a piece of equipment similar (funding or out of your own pocket) it isn't covered. In our case specifically.. Nic has outgrown his car seat. Yes we have a wheelchair van, yes Nic has a wheelchair, but Nic has grown. Wheelchair modifications are a must which would leave him without his only means of transportation, the van has to be serviced and quoted times currently say probability of 4+ weeks (THAT'S A MONTH!) we've been searching high and low for specialized seating for older children with special needs, but everyone knows those price tags are... ASTRONOMICAL! For a car seat for a child like Nic it can range from $3,000.00 to $10,000.00! That's a LOT of dough that we just weren't expecting at all! Our goal here is to try to raise enough money to purchase a Roosevelt car seat by Merrit Manufacturing $1828.00 USD for just the seat plus additional costs for everything we need to go with it plus the customs and shipping fees to Canada (it's from California) or the Columbia Spirit 2400 APS Car seat $2586.00 USD plus additional costs for the other things needed to go with it. I'm talking hip abductors, pommel, upper body side lateral support, side head lateral support etc. We've also been told that Nic needs proper postural support for school, and his Rifton isn't cutting the bill anymore because of a now reoccurring issue of pressure sores. So we are also looking to purchase a P Pod floor chair that can hopefully help this little miracle overcome some very serious medical issues to help make day to day life a little more bearable. I'm unsure of the exact price for the P Pod but it's a few thousand as well. We're not usually the type to ask for help but this is literally our last resort to get SuperNic what he needs since funding is refusing to help us. Thanks for reading! Please spread the word by sharing this campaign and donating what you can. A little boy named SuperNic has stolen my heart completely since day one and needs your help! Thank you and much love to you all. Sincerely ~ Mama Bear ❤️
Organizer
Melissa Poulter
Organizer
Edmonton, AB