What’s the biggest nightmare of any parent?
Is it the fear of a kidnapper? Is it some horrible, lifelong medical condition that needs constant medicine or repeated hospitalization? Is it worse than both of these because it is both at the same time?
Alex Rembis, from Texas, is afflicted by a seizure disorder as well as a rare bleeding disorder, called idiopathic thrombocytopenia purpura (ITP). And if these medical conditions were not enough of a challenge, he and his ten siblings were taken from their parents by Child Protective Services in August 2016.
The children were removed from the custody of Claire and William Rembis after allegations of neglect or abuse were registered. However, no such treatment or lack of treatment has been found. Despite this, all but one of the children remain in the custody of a group home, including Alex.
The Rembis family says that Alex’s seizures were under control when he was living at home. However, a seizure while in school, which was later found to be the result of a missed dose of his medication, occurred in October.
The following month, Alex experienced another seizure while at school, which was severe enough to warrant a hospital visit.
William and Claire Rembis have a court order that clearly states that they are allowed to be present for all medical visits for all their children while they fight for the custody of the other children. However, Alex’s latest trip to the hospital coincided with a planned visitation with all the children. Their request to reschedule until after Alex was back at the group home in order to be with him in the hospital was denied.
The caseworker, Jennifer Garlett, told the Rembis parents that their time at the hospital with Alex would be limited to one hour, a clear violation of the court order. During the time she and her husband were able to spend with Alex, Claire discovered that the no one had informed the hospital about Alex’s bleeding disorder.
She had to fight to get the doctors to test his platelet levels.
Idiopathic thrombocytopenia purpura (ITP) is a condition of unknown origin, but thought to be hereditary, that results in low platelet counts. Platelets are the clotting agent within the blood supply. When Alex was finally tested, he was found to be in the normal range, but on the lower end of it.
After the hour had elapsed, Garlett called for hospital security to escort Claire and William from the hospital. The doctor in charge of Alex’s care said that he had seen the court order and that Claire and William needed to leave. They were taken from the hospital without having a chance to say goodbye to Alex and without any assurances that he would be ok.
The Rembis family is concerned that Alex’s anti-seizure medication is not being administered properly due to the number of recent seizures he has experienced. When asked by his mother if he had been given his medicine that morning, Alex does not recall and explains that the foster parents told him that he was given his medicine.
Let’s hope that Alex and his siblings are reunited with their parents soon and that his medical issues can be brought back into a controlled state.
Click here to read more about Alex’s experiences.
What do you think should be done to educate public service groups about rare diseases like ITP? Share your thoughts below!