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Donations Sought - Family Seeks Help With Genetic Test

Donations Sought - Family Seeks Help With Genetic Test

Desiree and Antonio Shatswell read to their 2-year-old son, Landon, as one of the limited quiet time activities Landon enjoys. Landon suffers from a rare disorder where he doesn’t feel pain and can’t regulate his internal temperature. They are seeking donations to help fund a genetic test that their insurance won’t cover.


POSTED December 23, 2013 9:37 p.m.

At first glance, 2-year-old Landon Shatswell is pretty much like most active toddlers. He loves to jump and run, play with his toys and listen to his mom, Desiree Shatswell read to him at night.

But little Landon is not like most toddlers his age.

In fact, there are so few children like Landon that when cases like his crop up, geneticists and neurologists line up to take notes as they try to unlock the mystery that has become part of the Shatswell family’s life.

What makes Landon so special? Well, as his mother discovered when he was six months old, Landon cannot feel pain. But until he can get a specific genetic test performed, the NTRK1 (Neurotrophic Tyrosine Kinase Receptor, type 1), which is not covered by the Shatswell’s insurance, they cannot get an official diagnosis.

The test will cost $2,500, which is way outside of what the young couple can afford.

“They say it’s not necessary because it’s not life-threatening but it can kill you, so it doesn’t really make sense to me why insurance won’t cover it,” Desiree said.

However, even the suspected diagnosis would not come right away. In the meantime, Desiree, a young mom and wife, remembers that first injury quite clearly as it will be forever etched in her mind.

“I walked out of the room for a minute and when I came back, Landon was eating a candle I’d left burning on the table. He’d knocked over the candle and was eating the wax,” Desiree said. “He had blisters all over his hand and in his mouth. I didn’t even think. I just ran to get the candle out of his mouth. I was really freaked out but he didn’t even cry.”

Desiree rushed Landon to the emergency room where he was treated and released. No one seemed to have any real answers as to why the little guy hadn’t cried in pain when the fire had burned his tender skin and Desiree left the hospital with troubling questions.

“My husband has a high pain tolerance and I hoped that was it,” she said.

Six months later, Landon fell in the bathtub and suffered a major injury to his eye, splitting his eyelid open badly enough to need stitches. Once again, they landed in the emergency room and this time, the doctors started to realize something was different about Landon.

“The anesthesia wouldn’t work so they had to stitch him up without pain meds,” she said. “It was an awful experience. We waited for two hours for him to fall asleep and he was bleeding from his eye.”

That’s also when the questions started.

“He had a lot of emergency room visits,” Desiree admitted, saying that the authorities started to question if Landon was being abused. But in fact, Desiree and her husband, Antonio, were just as concerned and confused about Landon’s seemingly frequent brushes with danger. Soon, checking Landon’s small body for injuries became a routine.

“Every night we do a body check and find new bruises that we’ve never seen.”

Now, with Landon at 2 years old, Desiree has taught her son to tell her immediately when he bumps into something or falls, to show her where he suffered impact so she can check for injuries. For the young couple, it’s been a terrifying and frustrating journey down the medical rabbit hole as answers have been in short supply.

“Nobody tells you that your baby could be born this way,” Desiree said.

Soon after the bathtub incident, Landon was seen by a neurologist in Modesto who tested him for nerve sensitivity by poking him in sensitive places while they were playing.

“He never even noticed it was happening,” Desiree said.

Doctors also performed a histamine test on Landon but his test results were inconclusive and contradictory, which only created more questions.

Landon was referred to a geneticist at Madera Children’s Hospital, where, after more tests, it was discovered that Landon also suffers from anhidrosis, which is the inability to sweat normally or regulate body temperature.

“We found that anhidrosis and what Landon has go hand-in-hand,” she said.

While Landon is a typically active toddler, extra care must be taken so that he doesn’t inadvertently hurt himself or, as in hot weather, suffer heat exhaustion.

“He’s in daycare right now and they’ve been taught how to watch for warning signs that he’s overheating,” Desiree said. “He gets red in the face when he needs to cool down. We just make sure to keep him hydrated.”

But Desiree knows it will only get harder to keep her active boy in the safe zone as he gets older.

“It’s hard because my husband and I were really into soccer and we always thought our kids would play but Landon can’t play sports. It’s too dangerous,” Desiree said. “But he loves horseback riding. He thinks he’s a cowboy. He’s been riding since he was little.”

Although it was a relief to finally have answers, Desiree admits sometimes it’s very stressful to constantly be on her toes for her little guy because she knows she’ll never be able to stop being vigilant.

“There’s a sense of relief to finally know what’s wrong with him. It made me feel like a bad mom because I didn’t know what was happening to my son,” Desiree said. Her husband, Antonio, she said, struggles with the diagnosis, too, because it’s hard to rein in those natural tendencies between father and son to roughhouse. “He loves playing with his dad but I worry if they play too rough.”

Desiree has since joined a support group for parents with children suffering from this rare disorder and it has helped keep her sanity as well as connect her with resources.

“Landon needs eyes on him 24/7. If he falls, you have to make sure he doesn’t have a sliver or something not working right,” Desiree said, adding. “And how do you clean the house with a 2-year-old that you can’t take your eyes off?”

Antonio is planning to reenlist in the Army so Desiree can be a stay-at-home mom with their son as well as keep their insurance benefits but Landon’s peculiar medical condition has other far-reaching effects on their family structure.

“There’s a 25 percent chance that any other children we have will have the same problem,” Desiree said. “The geneticists want to look at his DNA to determine the specific mutation. That’s how we’ll get the actual diagnosis.”

The Shatswell family has started a donation fund through GoFundMe.com in the hopes that they can raise the $2,500 so they can have the NTRK1 test done.

Anyone who would like to help the Shatswells reach their goal is urged to make a donation here: http://www.gofundme.com/Landondrew

 

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