Saving Isaiah
Lauren Scheer 7/14/14
You may have heard about Isaiah, the Kansas City boy who is being held in foster care in Chicago because Luries Children’s Hospital has accused his mother of medical abuse. Isaiah has the same genetic condition as my son – Neurofibromatosis 1 (NF). NF prevents nerve cells from producing the protein that makes them stop dividing. It causes many different problems, including tumors that grow on the nerves (that, as you know, can become malignant, like my son’s did), as well as bone deformities (like my son has in his spine and pectus). As many of you also know from what my son went through, these bone deformities result in fragile bones that break easily and do not heal properly – the reason my son missed most of his 8th grade year after surgery for his scoliosis. Isaiah had bowing of his tibia, which resulted in a fracture when he fell at school at the age of 6.After his fracture It never healed properly, never grew properly, and after numerous surgeries, doctors decided to amputate his leg at the age of 15. For any of you who are familiar with amputations (or look it up on WebMD or other resource), phantom pain and tremors, that can be severe, are normal after surgery, but usually go away with time. It is normal for doctors to put in an epidural or spinal during surgery to alleviate some of the issues for a few days or even a week after an amputation. Isaiah had extreme pain after his amputation, along with tremors. Remember, he has NF, so he has nerve issues anyway. His doctors in Kansas City were not able to help him, so his mother took him to Boston Children’s Hospital where there are specialists in NF, and they were able to solve the issue. He was happy and healthy for a year. Then the pain and tremors returned. His doctors in Kansas City tried to find the cause of the recurrence, and after many tests, found a huge NF tumor in his torso – bigger than my son’s tumor. The doctors thought it had probably become malignant, and they referred Isaiah to specialists in this type of cancer (MPNST) in Houston. After weeks there, though, it was determined that the tumor was still benign – but would transform to cancer at some time in the future. They also found several other benign tumors that may have been causing Isaiah his pain and tremors. They referred him to Chicago, where a doctor with “golden hands” was going to be able to do surgery to repair the damaged nerves in his amputated leg, and remove some of the tumors. They were all optimistic that this surgery would solve Isaiah’s problems and he would finally be able to run again. While in surgery, the tremors happened – something that baffled the doctors. Tremors under anesthesia is unheard of. After surgery, the pain only became worse, and nothing the doctors did helped for any length of time. Isaiah’s mother contacted Boston Children’s to get him transferred there, as they had helped last time. Instead, Lurie’s Children’s Hospital reported his mother to the Department of Children and Family Services (DCFS), who took custody of Isaiah, and accused her of medical abuse – as if traveling from hospital to hospital to help him was wrong. Isaiah remained in the ICU at Lurie’s for another three weeks, and was put on 15 different medications, some of which were strong narcotics he never had to be on before. Even though his mother had a court order to see him, “something” always came up, and she went 24 days without being able to see him. When Isaiah was in excruciating pain, he would try to call his mom, but the hospital told him if he continued to do that, they would take his phone away! They told him his pain was all in his head – that it was anxiety caused by his mother, and that he had to “work through” each pain crisis. They finally released him to a children’s rehabilitation center, who immediately sent him back to Lurie’s because they were not appropriate for his care. He sat in Lurie’s ER for over 8 hours, and they were about to send him to a homeless shelter, when DCFS finally found a foster home for him – with a stranger, an older woman, living in a bad part of Chicago. His mother has lost her job because she can’t commute from Chicago to Kansas City, and has had to hire an attorney to fight to get her son back. The case has been in the Chicago courts for months now, and every time there is a court date, it ends up being continued. The last hearing resulted in the determination that he should stay in Chicago, under DCFS jurisdiction – even though Isaiah is a citizen of Missouri. Isaiah will turn 17 next month, and in Missouri, he will be considered an adult, but DCFS is trying to make him a ward of the court until he is 21 because he is disabled. Although I don’t know his mom, Michelle, in person, I did get to know her online long before this issue. She, like the other moms of NF kids in our group, asks questions and shares advice. She has always tried to do the best for her son, and it has not been easy because Isaiah is not an easy case. Isaiah wants to go home. Michelle has no more money for an attorney. She has tried to go to the media, but so many people just say that it doesn’t make sense, so she must have done something. But she couldn’t cause a genetic condition – one he inherited from his father. She couldn’t cause a bowing of a bone – something pretty common in NF. She couldn’t cause tumors to grow on his nerves – the NF caused that. If she was causing her son anxiety and that is why he had pain and tremors, then why didn’t they stop for the weeks after he had no contact with her? Remember, he remained in the ICU for over three weeks after! We don’t really know why they want to keep Isaiah in their care, but we have suspicions. It is interesting that she was trying to get Isaiah to Boston Children’s – who held Justina Pellitier, a competitive ice skater, for over 16 months, leaving her wheelchair bound. There is a study on NF at Lurie’s, and it is possible they are testing some drug on him – children in the foster care system are allowed to be experimented on without parental approval. The foster mother he has is the mother of another social worker in Chicago’s DCFS, and is also the mother of a nurse at Lurie’s. The foster mother constantly complains to Isaiah that she doesn’t have enough money, and by having him in her house, she gets over $1600 a month. In any case, Isaiah needs to go home to Kansas City. If they really believe he is being abused, then put him in the foster care system in Missouri! Before he was taken from his mother, a group of us had him approved for a respite week at a beachfront condo in North Carolina. For those of you who know my daughter, it is the condo project just south of where she lived. It’s amazing – but especially for Isaiah, whose last wish before his leg was amputated was to go to the beach. The week we reserved would be the week of his 17th birthday, the last week of August. He won’t be able to go if he is still held in Chicago. What can you do to help? Do you know an attorney that would help them pro bono or one experienced in cases like these that would not need a retainer? Go to their Hoperaiser.org website www.bringisaiahhome.org and donate or buy a shirt. There is a petition on change.org you can sign.https://www.change.org/petitions/judge-nicholas-geanopoulos-free-isaiah-from-the-state-of-il-his-home-is-in-kansas-city-give-isaiah-back-his-freedom-and-family-that-he-deserves-this-is-the-usa-parents-have-rights-to-seek-help-for-their-children?recruiter=14850706&utm_campaign=mailto_link&utm_medium=email&utm_source=share_petition
At least go to the Team Isaiah page. Read her posts from the beginning. You will probably agree that you would have done the same things she did – trying to help her only child! If we don’t do something, it could be your child or grandchild next. https://www.facebook.com/groups/SaveIsaiah/
