BUCKINGHAM COUNTY, Va. -- A Buckingham County family says their children's school district is drawing out the approval process for their children to receive homebound learning services, after having multiple requests be approved in prior school years, due to their children's rare neurogenerative disease.
About three years ago, Staci and Kris Wells realized their youngest child, William, was having some learning difficulties.
"We noticed that he was falling a little behind on the spectrum for his age group, so we took him to UVA Genetics, where they did testing, and that's where we found out he has MPS Type III. Sanfilippo Syndrome," Kris Wells said.
Her second eldest, Savannah, who is in elementary school, also was diagnosed with the disease shortly after.
"It was crushing," Staci Wells said.
"Most kids with it don't live, they live between the ages of 10 and 20. It's very rare cases that any of them make it out of their teen years. About 90 percent of them pass away from respiratory diseases," Kris Wells said.
Since their diagnosis, the Wells family says they've traveled to get different opinions from doctors, from UVA in Charlottesville to UMC Pittsburgh.
"It's usually about five to six trips to Charlottesville a month," Kris Wells said. "Or sometimes we have to go to Farmville, sometimes we have to go to Richmond."
The family has requested her children to receive homebound learning services through Buckingham County Public Schools multiple times since they've been enrolled in school, not only due to their constant need for medical visits but also due to both Savannah and William's risk for airborne, respiratory illness in more crowded spaces.
"It's better for them to have one teacher, or one teacher per child come in, versus them being at school with hundreds of kids regularly," Kris Wells said.
"If I send her back, then that's just defeating everything," Wells said about his oldest daughter in high school, who does not have the disease.
The Wells said their requests have been approved on multiple occasions since Virginia Department of Education standards say homebound learners must reapply for services every nine weeks.
This school year, the family put in a request for all three children to receive homebound learning at the primary, elementary, and high school levels, and up to one day before the start of school, they had still not gotten clear confirmation from the school district on if their children have been approved or not.
"We have no idea what we're going to be doing. As of right now, I'm not sending them tomorrow, on their first day, because the school has not contacted me on what to do," Kris Wells said.
The family showed CBS 6 paperwork from pediatricians at UVA, saying they support the children receiving homebound instruction, with one doctor saying she was "concerned about exposure to viral illness and contagious diseases at school which will worsen William's asthma and MPS."
All three students had documentation from a physician requesting homebound services.
Though the family did receive some information in the mail about their two youngest children's class schedule, they say they have not been given any updated information on what homebound services will look like.
They say no information has been shared about their eldest daughter's high school curriculum and whether or not it will be strictly homebound.
A representative with the school district told CBS 6 they could not comment on individual student cases, but said all homebound instruction follows guidelines from the Virginia Department of Education.
According to the VDOE's guidance, an Individualized Education Program (IEP) committee at each school district must receive proper documentation for students' medical needs, as well as plans on how to transition students back to school.
IEP teams at different school districts determine if the homebound services are appropriate.
Though homebound learning services are meant to be temporary per VDOE, the guidelines do allow individual school districts to "consider whether or not to allow students with such conditions to present certification from the doctor for longer than the suggested nine-week calendar. For these students, it may be appropriate to extend medical certification for the duration of the condition."
The family says their children's circumstances have not changed, wondering why they have not received approval this time around. The Wells said homeschooling on their own is not an option, due to lack of high-speed internet, and their health issues.
"It just feels like they're getting left in the dust," Kris Wells said.
The family says they will wait for a call from their school representatives, hoping to see it happen again, even with an anticipated increase in hospital and doctor visits for their two youngest.
"They don't let it weigh them down. They still live a normal life," Staci Wells said. "That's what I'm most proud of."
CBS 6 is committed to sharing community voices on this important topic. Email your thoughts to the CBS 6 Newsroom.
