Moultonborough family faces financial, medical hurdles in seeking care for daughter

MOULTONBOROUGH — These days, when someone asks Jena Robertson how she’s doing, her answer is “I’m doing it.” That’s about as much as she can muster, considering the nightmare of a medical diagnosis that has thrown her family into crisis and could also likely sink her business.

Robertson, her husband and two children relocated from Washington state to Moultonborough in August of this year, seeking a better place to raise their family. To make the new life possible, Jena transitioned from a career in social work to owning and operating a daycare. She, along with a business partner, took over an existing facility on Whittier Highway and rebranded it Enlightened Beginnings Childcare Center, which was both a way for her to earn income and a way to secure care for her two children.

Their plan barely had a chance to start working when they got the kind of news that most parents only hear in their nightmares: their youngest child, Lorelei, less than 2 years old, has a rare congenital disease for which there is not currently a cure.

Lorelei’s diagnosis came after Jena and her husband Zach brought their young daughter in for an issue with one of her eyes. They learned, about a month ago, that the root cause of Lorelei’s problem was much deeper than first suspected.

Lorelei has dyskaritosis congenita, her parents learned, a disease caused by a genetic mutation. And she has a yet rarer form, known as Revesz syndrome. Her bone marrow has already failed, making her dependent on regular blood transfusions. She is a candidate for a bone marrow transplant, which, even if a match could be found, would only buy time.

But, Jena said, “Rori,” as they call the baby of the family, is a fighter, and they’re not going to throw in the towel while there’s still time left to battle back.

“This is a fatal condition. What this syndrome does is it attacks the organs, it kills everything in the body,” Robertson said. Her daughter has lost vision in one eye, and the medical team is hoping to save vision in the other. In the meantime, the Robertsons are urging everyone between the ages of 18 and 40 to go to bethematch.org and order a cheek swab test to enter the bone marrow donor registry. Each potential donor added to the list increases the odds that someone’s life will be saved or at least extended, and perhaps that life will be Lorelei’s.

“We have no idea what age she’ll live to. Our hope is we have a successful transplant, which would give her more time,” Jena said. More time for research, more time for clinical trials, more time to fight.

Lorelei’s diagnosis came less than a month ago, and with it has come a schedule of near-constant appointments and procedures with specialists. All of those visits, along with the heightened risk due to Lorelei’s compromised immune system, have made Jena’s business plan insolvent.

A relative has set up a GoFundMe page, “Lorelei’s Fight,” to help soften the financial burden. But even with that help, it’s difficult for Jena to think about the family’s financial future.

Operating the daycare center was already a challenge, with the national shortage of workers in the industry. The U.S. Bureau of Labor Statistics estimates that the workforce for child care, as of August 2022, is 8.4% smaller than it was prior to the pandemic, while the rest of the workforce has largely recovered.

Earlier this fall, Robertson was able to keep the doors open to Enlightened Beginnings by filling in when a teacher wasn’t available. Since her daughter’s diagnosis, though, the concern about exposure to illness and the many medical appointments have largely kept her from the center, which has put the operation in jeopardy.

“As of right now, we are set to close at the end of next week. We’re trying to finagle another week in there; we’re not sure if that is possible,” she said.

Robertson is hoping that she can either find three or four full-time teachers to join her center, and a few more substitutes or student-teachers would also be useful. Alternatively, she is also hoping that someone might appear who would be willing to take over the center, which is licensed to care for 51 children.

Unless a solution for the child care center appears, and soon, Enlightened Beginnings will close. With it will go Robertson’s income, at a time when financial stress is the last thing that the family needs.

Neither Robertson nor her husband, who works installing fiber optic equipment, has employer-sponsored health insurance, so when they started seeking care for Lorelei, it was as an uninsured family. That experience, Robertson said, opened her eyes to certain realities of the American health care system.

“It has stopped us from getting care when we needed it. I think that’s really unfortunate because I have a child who needs that care,” Robertson said. She was shocked when she contacted high-profile medical institutions, including those based in Boston, and was told that before they would agree to see Lorelei they needed to arrange payment, either through an insurance company or in the form of a substantial, out-of-pocket downpayment from the family.

Finally, the family was connected with a team at Dartmouth Children’s Hospital, which agreed to begin caring for Lorelei without arranging payment first.

Since then, the family has worked to get Lorelei covered for medical care. Their income is too high for conventional Medicaid, but they have learned about a special program known as “Katie Beckett Medicaid,” a federal program that covers medical needs for children not already on Medicaid who require acute care for serious and chronic medical conditions.

However — and this may come as no surprise to anyone who has applied for a federal program — getting enrolled wasn’t as simple as meeting the requirements. The approval process takes months, typically, but Lorelei doesn’t have that kind of time.

“We were lucky and had good people in our corner,” Robertson said. Daily calls from family members as well as medical staff, and even pressure from New Hampshire’s senators, have succeeded in getting Lorelei’s application on an “expedited” track, Robertson has been told.

The ordeal has left a sour taste in her mouth.

“We already don’t have a lot to give, to know that the one thing that we wanted, just to save Lorelei, to help her and care for her... we felt we were being stopped from doing what she needed. Everything she needed had a money tag on it,” Robertson said. “Of course, we would pay until the end of time if we had to, to make sure she was cared for.” She worries what navigating such a challenge is like for families with less agency and advocacy.

With that fight over, the Robertsons know they will have to keep their guard up. Financial pressures won’t get any easier, and so Zach will have to keep working as much as possible. He works on a contract basis, getting paid only for the jobs he completes. He is the family’s sole earner now, without any paid time off for family medical leave. Further down the line, the Robertsons will need to find a new home, as the place they are living right now is only available for rent during the winter.

Jena is showing up for the fight, though, “because there’s no other choice,” she said. Though she said her family is struggling, if she's being honest. Her 4-year-old can’t go to preschool, and can’t do the kind of things a child of that age would like to do, for concern that she would bring an infection back home with her. They are secluded and facing future possibilities that range from horrific to challenging.

“It’s going to be an interesting time, figuring out how we’re going to make all of that work and come back to a home at the end of it,” Robertson said.