*** UPDATE
GREAT NEWS!! We were able to raise enough to put a small down payment on a 2023 used Toyota Sienna November 2024. This is still a big financial stress on our family with a medically complex child. We are keeping this fundraiser open to help offset the cost of medial item James needs to stay healthy and happy for years to come!
Our family was trying to raise funds to use towards a new/new used handicap accessible van for our son James. The current cost of an accessible van is somewhere between $50,000 and $90,000, depending on the make, model and if it’s new or used.
Let me give you a little background on James. He was born on August 29th, 2009, via emergency c-section due to lack of movement. When he was born, he didn’t cry, had a 2-vessel cord (typically we have 3) & low muscle tone. He spent two months in the NICU at Lutheran General Hospital. Since his arrival in 2009 they have determined that…
– James had a stroke during the first trimester. During an MRI while in the NICU they could see old white matter which was damage due to that stroke.
– James has no suck/swallow reflex and is therefore unable to eat by mouth. He gets his food and oral medications via a g-tube, which is a tube inserted through the wall of the abdomen and directly into the stomach. Since he can’t swallow to control his secretions, he needs frequent suctioning to keep his airway open.
– James cannot hold his head up, sit, stand, or walk. He is hooked up to a pulse oximeter monitor 24/7 to show his oxygen levels and his heart rate. His oxygen levels can drop into the 70’s in a matter of seconds and rescue measures needs to happen FAST! He either needs deep suctioning, a change of position or oxygen. It can be scary to watch.
– They found that James had severe reflux while he was in the NICU and had a surgical procedure called a Fundoplication done to prevent severe reflux when he was only one month old. This procedure involved taking the top part of the stomach, folding it around the lower esophageal sphincter, and sewing it in place.
– James & his mom both have Factor V Leiden, which is a blood clotting disorder. This is probably the cause of the stroke because he/they threw a blood clot since he only had a 2-vessel cord.
– The optic nerve in his left eye never fully developed. He doesn’t know how to close his eyes, so they are constantly putting eye gel or drops in his eyes because they dry out quickly. There have been talks about sewing the corner of both eyes closed to help prevent the cornea from drying out.
– When James was 5 months old, he was diagnosed with a catastrophic form of Epilepsy called Infantile Spasms. They have tried over 10 different anti-seizure meds. In addition to the seizure meds, he also has a vagal nerve stimulator (VNS) inserted into his chest. The VNS sends regular, mild pulses of electrical energy to his brainstem through the vagus nerve in his neck, which has been shown to reduce, and in some cases, eliminate seizures. They call it the pacemaker for the brain because it sends a shock to his brain every minute.
– James was diagnosed with Quadriplegia Cerebral Palsy at the age of 1, which is a form of cerebral palsy that affects both arms and legs and often the torso and face. Quadriplegia is the most severe of the three types of spastic cerebral palsy. It requires lifelong treatment and support!
– In 2019 James had to have a full spinal fusion from his C2-L5. That means he has a rod with A LOT of screws going from his neck to the top of his tailbone!! James and his mom spent 31 days in the hospital after surgery because whenever James gets sick or has a procedure done his tummy shuts down!
– In 2021 James had to have a tailbone wound closed due to the spinal fusion. The rod started to rub and created a wound that left him with a gaping hole, and you could see his bone.
James will always need someone with him 24/7! His mom had to leave teaching when he was born to take care of him. She has been able to work from home with some odd and end jobs, but she is always on call to pick him up from school if there is a medical emergency… sadly he has MANY medical situations especially with aspiration pneumonia. James has been hospitalized with THE BIG P (pneumonia) every year (sometimes multiple times a year) due to not being able to handle his secretions and an adult not being able to suction them out before they go into his lungs.
James & his parents have been through a lot these past 15 years, but the journey is not even close to being over!! Family and friends of James Fulkerson are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with James’ medical conditions.
They have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to help James’ family pay or reimburse medical and related expenses.
To make a tax-deductible donation to this fundraising campaign, click on the GIVE button. And please share James’s page on your social media.
Thank you for taking the time to read about James and his family. For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
