ONTARIO -- A six-year old Ontario girl has a significant medical opportunity at her fingertips.
Ellianna Nelson, who has a rare, unidentified disease, has been approved to be a patient at the National Institute of Health (NIH) in Baltimore, Maryland, Elliana’s mother Samantha Nelson announced on her Facebook page.
“Basically, a patient would have to have something so rare or medically complex that other hospitals cannot solely accommodate the patient. (Elliana’s team of doctors at Nationwide Children’s Hospital) warned us that not everyone meets the criteria and to not get our hopes up,” Nelson said. “Guess what? Elliana was accepted.
“After over a month of the NIH going over her health history, they’ve determined she meets the criteria and is eligible. This is such amazing news. We are so very grateful for this opportunity for our girl & her health. Praying and praying that they can provide us with answers there.”
However, the opportunity comes at a hefty cost. The location does not offer a Ronald McDonald House nor any other medical lodging options, according to Nelson’s post.
The Nelsons will be responsible for lodging, travel and food expenses, in addition to Elliana’s medical bills.
Further, because of Elliana’s health, Samantha Nelson hasn’t been able to work a full-time job for nearly seven years. Elliana is unable to go to daycare and can’t attend school from October through the end of March, as she is highly vulnerable to sickness.
When getting a cold or flu, the 6-year-old often needs hospitalized.
It has prompted the Nelsons to do something Samantha says they don't typically do -- ask for help.
“As a family of six and with all of Elliana’s health issues, it gets overwhelmingly costly on just one income. Being honest about these kinds of things is NOT easy for me, I’ll admit. But we have struggled immensely for almost seven years since our beautiful girl was born,” Nelson said in her Facebook post.
“It’s time to be honest with everyone and ourselves, for her. I would never do it for myself, but I’ll do it for her.”
She recalled how one of Elliana’s hematology nurses shared the news. First, she gave the good news. Then, she explained the process and “laid it all out” as to financially what it means.
“We’ve been told that once they determine which departments/doctors they want a patient to see at the NIH, things start to move very fast. The appointments are usually scheduled to be within the next twi weeks following,” Nelson said on Facebook. “They will need Elliana there in Baltimore 24 hours prior to her first scheduled appointments and then at least two days worth of testing and appointments thereafter for her first initial visit.
"We are looking at a three-day visit initially.”
Then, if they still can’t find her diagnosis, the Nelsons have been told that NIH will provide treatment options for what they already know is wrong and treatments for whatever new information they may find without a full diagnosis.
If this is the case, they will likely need to see Elliana every three months for at least the next 1.5 years.
If they do find a diagnosis -- depending on what it is and what treatment looks like -- they could potentially want to see her as much as once a month for a longer period of time.
“And I was like OK, we’re going to do what we need to do to get her there. I don’t want to miss this opportunity for her. It could be so life changing for her,” Samantha Nelson said in a phone call.
On Facebook, she explained that she is willing to “step out of every comfort zone” to ask for help for Elliana.
“We are worried that we will not be able to afford to get our girl this amazing opportunity,” Nelson said. “We don’t usually ever ask for help, but today, I’m very humbly asking for any help we can receive.”
To help the Nelsons cover medical expenses and more, people can donate through a Go Fund Me account set up by a family friend.
“They are some of the strongest people I’ve ever met, some of the nicest people, and they’ve never asked for help. Please, if you’re able, please consider donating to help relieve the financial burden for this family as they continue to fight for their daughter,” the Go Fund Me reads.
Nelson said she doesn’t “have words to describe how grateful” she and her husband are.
“People have already been generous beyond what we ever could have imagined,” she said.