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Jackson is a Medical Mystery, Paving His Own Path

Jackson has a big impact on just about anyone who meets him (or hears his story).

“He is a true fighter,” says his mom, Heather. “This little man doesn’t stop at anything. He is absolutely an inspiration to strangers, family and friends near and far. He truly is moving mountains and I am so proud of him.”

DSC_8787At two years old, Jackson is a medical mystery, frequently leaving health care professionals wondering what his test results mean and determining he must have ‘Jackson syndrome.’ And although he doesn’t have a primary diagnosis, he has a handful of secondary diagnoses – 38 to be exact. PHS has provided supplies for his needs since their first day home on this medical journey.

“PHS has been amazing to us,” says Heather. “Lynn (a PHS customer service representative) is our awesome person.”

 Starting the Journey 

Jackson was born with no symptoms aside from acid reflux. But when he woke up vomiting and unable to keep anything down at five months old, Heather went to the doctor for answers and eventually, he was admitted to the hospital where he began fighting for his life – quickly losing weight and coming to a standstill developmentally.

10313596_233561750171853_7822117080256705289_nTo address his sudden inability to feed orally, doctors inserted an NJ tube, and after a few months of making changes (and around 10 hospitalizations, Heather estimates), he switched to a MIC-KEY which he uses today for his round-the-clock feeding, unable to take in any food orally. But even with test after test, health care professionals are still unable to diagnose why his body is behaving so mysteriously.

“Since we don’t necessarily know what’s wrong with Jackson, we can’t predict the outcome by any means,” Heather says. “With many diagnoses, you would know how to treat it and what to expect. You’d know the pros, cons, symptoms, best methods. But with him, we don’t know. But we keep working on figuring out how to keep helping him as best we can.”

While Jackson was in the hospital, doctors discovered an issue with his corpus callosum, causing it not to form and connect properly during pregnancy. Additionally, there was an assumed stroke that happened at some point between pregnancy and birth, causing problems with his right side.

Overcoming His Challenges

DSC_9117Despite the obstacles that have been put in front of Jackson, he takes on life with a fighting attitude and a smile. Motor planning skills such as walking and talking haven’t come as easily, and in some instances makes it harder to understand if he’s in pain or experiencing symptoms. But thanks to daily therapy and determination, Jackson can now walk and communicates through the sign language he’s learning.

“He is beating the odds every day and is rocking therapy beyond belief to re-train his brain to function correctly. We have a long way to go, but he is impressing every doctor and therapist he encounters,” says Heather proudly.

Heather has also tackled his cares and needs with dedication and knows all of the subtle signs and behaviors. Jackson has dysautonomia, which means he doesn’t regulate his temperature which can quickly go between 93 and 103. But the difference between a trip to the hospital and staying at home is the knowledge that in 20 minutes, his symptoms could change and stabilize – a decision process Heather knows well.

10372577_248515392009822_3113506402055532514_nTo care for his secondary diagnoses and symptoms, Heather works with Jackson’s doctors to provide care management and maintenance of each symptom. And to get the nutrients his body needs, Jackson will rely on the breast milk that will be delivered through his feeding tube until age 5.

“You don’t look at him wearing a backpack and think he sick or fragile. Jackson looks awesome and you can’t tell that he has these “invisible” diseases. It’s scary to me that he’s living on a machine that needs to be plugged in at night to receive his nourishment. So that scares me, as a mom, for his whole life to be dependent on a machine.”

Living in the Moment

10653790_284220658439295_8545795501437845116_nFor these two, the most important day to focus on is the current one. Jackson gets out and about, playing outside, attending HopeKids events, and spending lots of time playing at home with mom.

“We have no idea what Jackson’s future holds, so I try to just focus on enjoying him now. He deserves the best, and we have so much fun day in and day out. I made a promise to him during one of our hospital trips that he would not live just a medical life, because that can fill days up very quickly. So we’re busier with play dates and park trips and all of those fun activities, but it’s worth it – he gets to enjoy his life too.”

Finding Support from (and for) Others

UntitledHeather has found support in the Facebook community to tell Jackson’s story and make connections with other families walking down a similar road. She runs a page called Team Buddy. Cheering on Jackson to keep family, friends, and supporters up to date on his progress, adventures and everyday life – and has realized what an incredible resource it is in the process.

“It’s amazing because everyone there gives us support and prayers and it’s really nice. Facebook is 100% needed for medical families.”

Heather also passes along the research she finds to other caregivers who can benefit from it, hoping to save them the time and energy of having to search for assistance and organizations that can help children with medical complexities.

Looking Forward

10275598_233462176848477_3334247683018034534_oWhile Heather and Jackson might not know what the future looks like, he is showing no signs of slowing down. Thanks to his therapy and cares, Jackson is continuing to surprise physicians and make progress as he gets older.

“We’re beating the odds right now, and we can’t lose momentum,” says Heather. “We will keep managing the symptoms and information we do have, and work toward an answer for what we have not found yet.”

Heather has discovered how strong Jackson truly is, and knows to never lose hope or determination. While Jackson may not develop in a standard pattern, she is in awe of the progress he is making and keeps living day to day.

“You do what you have to do. I could be miserable, or I could be happy – and he’s shown me that. It is what it is, and he deserves the best.”

PHS will be right there with Jackson and his mom the whole way, providing the supplies and care that helps him be the active boy he is.

Originally published: December 31, 2014