At 6 years old, Isaiah Rider got around with a child-sized walker plastered with SpongeBob stickers. His need for the walker started after he broke his leg, launching him into a series of surgeries for a bone that, in the end, would never heal properly and would impact the rest of his leg's development.
For years, Isaiah was in and out of casts, but he didn't lose sight of his dream to run again. The day after his 15th birthday, Isaiah went into surgery to have his leg partially amputated. It was something he hoped would allow him to be fitted with a prosthetic and give him back the mobility he wanted.
Isaiah is now 16 years old and just this summer, he ran. But the accomplishment was bittersweet, because his mother wasn't there to see it.
That's because the teen from Missouri was taken from his mother's custody, as TheBlaze previously reported, and put into foster care in Chicago in a case that he, his family, his mother's lawyer and a state representative consider unjust accusations of medical child abuse.
Isaiah Rider and his mother, Michelle Rider. (Image via Team Isaiah/Facebook)
Isaiah's case got underway just before Justina Pelletier — the Connecticut teen who spent more than a year out of her parents' custody in a high-profile case that originated in a medical care dispute — went home in June. His case has several differences though, one of them being that Isaiah was able to speak about his own thoughts on the situation while still in state custody.
What's more, his mother and her lawyer are dredging up what they believe are violations of a decades-old federal law that they hope will help bring Isaiah home after the next custody hearing later this month.
'They Literally Did a Hospital Kidnapping'
Isaiah's mother, Michelle Rider, said her son's medical issues began to compound after his surgery to amputate his leg in Kansas City, Missouri.
Within 24 hours of the surgery, Isaiah developed severe pain and involuntary tremors in his leg, which progressively got worse.
"They couldn’t get [his] pain managed," Rider told TheBlaze. "He was transferred to Boston Children's Hospital; Kansas City couldn't manage him."
In Boston, doctors numbed a nerve and were able to get Isaiah's pain under control.
"We came back to Kansas City, he weaned off the meds and for a year Isaiah was good," she said. "He was walking great. You couldn’t even tell he had a prosthetic.
[sharequote align="right"]"They literally did a hospital kidnapping."[/sharequote]
"But in September 2013, Isaiah started having pain again. The pain was followed by those movements again, leg tremors, convulsions, just in that leg," she said.
Then in December, Rider and Isaiah were back at the Kansas City hospital for a mass under his arm, in addition to leg convulsions and extreme pain. Eventually, unable to get his pain under control, Rider took her son to the hospital that had helped before: Boston Children's.
An MRI revealed that he had tumors on his spine. The diagnosis: Isaiah had neurofibromitoisis.
The next few months were a blur. Isaiah and his mother traveled to different hospitals around the country where they were met with conflicting diagnoses of whether the tumors were cancerous or not. Eventually, Isaiah ended up at Lurie Children's Hospital in Chicago on March 31 for a surgery to remove tumors in his leg.
"The surgeon was hopeful this would help his pain," Rider said.
Isaiah Rider before a surgery to remove tumors from his leg that were causing him pain. (Image via Team Isaiah/Facebook)
But while under general anesthesia, the leg tremors started up again.
Out of surgery, Isaiah's pain continued, Rider said. She said doctors tried to help him with epidurals and other medications, but it wasn't working. At one point, during what ended up being a several-week hospital stay, Rider said doctors told Isaiah to try to manage without drugs.
"They couldn’t help him, and I, as his parent, requested, 'Please, get him help somewhere.' I wanted him transferred," Rider said. She said she didn't necessarily want him on more or stronger medication, but wanted him to get some sort of treatment that worked.
An example of Isaiah's extreme leg tremors can be seen here (note: This footage might be considered disturbing as it shows him in considerable pain).
Rider said she called an ethics meeting with her son's doctors and social workers, asking that he be transferred to another hospital, including Children's Hospital of Philadelphia and Cincinnati Children's Hospital Medical Center. He was supposed to travel to the Philadelphia hospital, but it fell through, she said, when the hospital felt it couldn't help him. Rider said Lurie Children's, where Isaiah was, seemed unwilling to work with Cincinnati.
On April 15, Rider was on her way to Lurie to visit Isaiah, but before she could see her son, she was met in the lobby by a social worker who escorted her to a room with two doctors and another social worker, none of whom she had met before, she said. There, Rider recalled, she was told that they would be taking Isaiah into emergency custody, citing evidence of medical child abuse as the reason.
"They literally did a hospital kidnapping," Rider said.
A judge granted the Illinois Department of Children and Family Services temporary custody and later placed Isaiah in foster care. On July 2, a judge ruled that Isaiah would remain in protective custody for the time being.
What Do the Doctors Say?
According to the Chicago Tribune, at least one medical report cited a "a clear pattern of patient improvement when the mother is not around, deterioration when mother is present and continued conflict regarding mother's insistence that only pharmacological means can be used to treat [the boy's] pain."
"All attempts to … have [the] mother voluntarily partner with us in [the boy's] care have been futile and met with resistance," the Tribune reported of another record. "In order to best develop a therapeutic medical plan for [the boy], we need to remove the mother from his care at the moment."
Julie Pesch, a spokeswoman for Lurie Children's Hospital, told TheBlaze in an emailed statement that the hospital could not comment due to patient privacy issues.
"Lurie Children’s has a long history of providing family-centered care to all our patients. As part of our 132-year mission, we are committed to ensuring the health and welfare of every child we serve," Pesch said.
Illinois DCFS did not return TheBlaze's request for comment.
Randy Kretchmar, Rider's attorney, told TheBlaze that Isaiah's case bears similarities to that of Justina Pelletier's in that doctors suggested that physical symptoms originated in a patient's head.
In Isaiah's situation specifically, Kretchmar argued that the "diagnosis of neurofibromatosis is a very real disease and necessarily implies a lifetime project of pain management."
Image via Team Isaiah/Facebook
Less than a month from his 17th birthday on August 28, Isaiah is in a position to voice his own thoughts on his case.
[sharequote align="center"]"Ruined my life."[/sharequote]
Isaiah told TheBlaze he was "shocked" and is still "trying to understand and cope with what did she really do? I’m still confused about what happened. ... My mom didn’t deserve this."
Isaiah said he misses his family, friends and his job back home, and hopes that the next court hearing on August 11 allows him to get home before his birthday and back to school on time.
"I got a scholarship. I want to graduate with my class," he said.
Being in a completely different state, Isaiah said that he has made some friends, but "it’s just not my home."
He also said he hasn't had any pain or leg episodes since leaving Lurie Children's.
"They kept telling me that … my anxiety is my mom causing me pain. There were times [though] where I’d be in pain for hours at a time and they wouldn’t give me anything," he said of his experience at the hospital. "I needed, like, a muscle relaxer and they wouldn’t give me anything for it. Told me to wait it through. That’s immoral to me, when patient in pain needs medicine, give him some pain medicine. I was hurting so much at one point my nose bled."
"If I was a doctor, I’d be ashamed if I heard of other doctors doing stuff like this. They’ve been lying in the court," Isaiah charged.
Isaiah has not been at the courthouse for previous hearings, but said he wants be allowed in on August 11.
He took an even stronger stance about being taken from his family in a recent video where he said the experience "ruined my life."
Watch Isaiah talk about his own situation in a video posted on YouTube July 25:
At their next court date, Rider and Kretchmar, her Illinois-based attorney, plan to bring up what they believe are violations in federal law that could bring Isaiah back home.
"The Indian Child Welfare Act is a very huge part of this," Rider said.
The ICWA was passed by Congress in 1978 to "protect the best interests of Indian children and to promote the stability and security of Indian tribes and families."
"ICWA establishes burdens of proof that are higher than those applied in non-Native cases. When an Indian child is involved, the court must find that the children are dependent by using the clear and convincing evidence standard, rather than the preponderance of the evidence standard used in state court," the Tribunal Law and Policy Institute wrote. "Using expert witnesses, there must be a finding that continued custody of the child by the parent of Indian custodian is likely to result in serious emotional or physical damage to the child 25 U.S.C.ß 1912(e)."
According to Kretchmar, ICWA "supersedes state laws on child custody ... and Isaiah Rider meets the definition of an Indian child so it covers him." Rider said Isaiah qualifies as a member of the Choctaw Nation.
"It cranks up the standard of proof to take temporary custody," said the lawyer, whose previous work has focused on representing psychiatric patients who do not want to take medication. "It should at least be clear and convincing evidence to ever take someone’s kids away."
Kretchmar noted that he didn't see any acknowledgement in the documents he reviewed that the state understood what was required by ICWA.
"They have a machine in the juvenile court and it just runs," Kretchmar said, adding that he thinks the larger issue is the increasing number cases where doctors and social workers are using medical child abuse or Munchhausen by proxy — a mental condition where the caregiver fakes or actually causes symptoms in a child — as reasons to take children from their parents. In Kretchmar's view, not all these cases are justified.
"I think we’ve decided there is this class of experts who knows what’s good for all of us and what's good for our kids and we should simply bow down to them," Kretchmar said. "I think it’s an extremely destructive idea and people don’t even realize they’ve agree with it."
When asked about the "other side" of the story, which seems to be missing from cases like Isaiah Rider's and Justina Pelletier's where mostly a parent's perspective is heard, Kretchmar said while the public might want to believe there's "another side," or a justifiable reason for these children to be removed from their parents, but "it's not the case."
"The system is something that needs to be radically confronted and resisted and changed and abolished," he said. "It’s very, very similarly minded people, a class of people who believe that they understand what’s better for other people’s children. They wouldn’t come out and say that, but that’s what they do. They make their living from acting that way."
People want to think "there must be something," Kretchmar said. In other words, that "the system can’t be that bad. No, I’m sorry it is."
While Rider said she hopes ICWA violations will help bring Isaiah home, she doesn't think it should stop there.
"The laws of ICWA should be the laws of every child," Rider said, expecting a higher standard. "There’s a problem now that’s affecting all children and it’s not prejudiced to race, religion, how much money your family makes. There are common factors that we’re seeing, like chronic illnesses [that aren't understood]."
If possible violations of ICWA laws do not bring Isaiah back to Missouri, Kretchmar said he fears the case could be as long and drawn out as Justina Pelletier's. In Illinois, children can remain in the foster care system until they are 21 years old.
Missouri state Rep. Ken Wilson told TheBlaze he was stunned when he heard of Isaiah's situation.
"I’ve got 30 years of law enforcement experience. I know a little about this," he said. "No one wants to condone or support child abuse. I’ve seen it first hand and it is absolutely horrible.
"But here's a kid with an entire life of recorded medical history and the parents are accused of medical abuse? That’s just, you can’t even begin to make that make sense," he said, noting that as a pastor, he feels he's also a good judge of character whose "B.S. reader goes off pretty quick."
"These parents are hurting. What happened to them just should not happen to anyone else," Wilson said. "Who can possibly believe that child is better off in a foster home in Chicago than in the family home. That’s another one of those bizarre things that you just have to think, 'really?'"
Wilson said he plans to talk with his colleagues about introducing legislation to make sure "no other parents have to go through this." On the federal level, legislation termed "Justina's Law" has already been introduced to "prohibit federal funding for medical experimentation on a ward of the state."
"I was living in this happy, American life that I thought was real. Then I realized that there’s this whole other dark side," Rider said. "I’ve been advocating for my son since he was 6 years old. He’s the most important thing that God has given me, and I’ll never stop."