Families of children with rare and serious diseases as well as young adults staying at The Children’s Inn at NIH during the COVID-19 pandemic thank you for staying home and practicing physical distancing.
They are children with difficult-to-treat blood cancers, rare genetic diseases, sickle cell disease, blood disorders and other life-threatening conditions. All of them have stayed at The Children’s Inn during the coronavirus outbreak because their treatment as part of NIH clinical trials couldn’t wait. Among them is a family from Sweden with three young children with a degenerative genetic disease that is ultimately fatal. A gene therapy trial at the NIH is their best hope to change their children’s genetic fate.
“We have waited for this trial for well over a year now, and as it happens, when it’s our turn, it coincides with the COVID-19 pandemic,” says Niclas, the father of three children with gangliosidosis. “We’ve managed to stay clear from COVID-19 so far, but right now our children are on immunosuppressants, and they are in a very fragile state. Also many families at The Children’s Inn have children that are in a very fragile state. If our kids were to get COVID-19 at this point, we would have to postpone the trial and might not even get a second chance to participate in it. So, we would like to encourage everyone to stay home if possible. If you do go outside, remember to social distance and remember to also wash your hands often.”
“Your actions can make a huge difference, and in the end, they can save lives,” adds Niclas’ wife, Jessica, in a video message in which she and her husband encourage residents to stay home and take other safety measures. Read more about the family’s journey to save their three children’s lives in a Washington Post article published Sunday.
For Damond, 22, of Lumby, British Columbia, Canada, an immunotherapy trial conducted by the National Cancer Institute is his best chance to put his difficult-to-treat leukemia into remission.
“The NIH and The Children’s Inn are safe places where patients like me undergo and recover from experimental treatments and get the help we need to survive,” Damond says. “For me, contracting the new coronavirus could possibly be fatal or could mean I cannot get the treatment I so desperately need. So, for children and young people – and everyone who is immunocompromised in some way like we are – please stay home, wear masks, wash hands and practice physical distancing. If you don’t do it for yourselves, thank you for doing it for people like me!”
Inn resident Damond, 22
Damond first was diagnosed with leukemia in 2017 and relapsed in February. He recently underwent chemotherapy to keep his cancer in check until his modified immune cells have multiplied and can be infused into him to fight his leukemia. His cancer treatments make Damond highly vulnerable to infections like COVID-19.
Amri, 18, spent several months at The Children’s Inn and recently returned to her home in Plano, Texas.
“I recently underwent a bone marrow transplant to prevent me from ever developing leukemia and other life-threatening illnesses from the genetic disorder I was born with,” the high school senior says. “The transplant went smoothly, but now I have to wait for my new immune system to strengthen. That means my body, for now, remains unable to effectively protect itself from diseases and infections like the new coronavirus. For children and young people like me, physical distancing and staying home is life-saving – even though I know it’s hard and can be lonely. I have had to be on ‘lockdown’ since January for my own protection. But please know that I and the other children and young adults at The Children’s Inn are deeply grateful to you for staying home and practicing physical distancing for us. Thank you for protecting us!”
Amri was born with an ultrarare immune deficiency. The disease made it hard for her body to fight bacterial and viral infections and even simple colds could turn dangerous. Her disease also left her vulnerable to certain cancers. A bone marrow transplant at the NIH was her only hope for a cure for her potentially deadly disease. However, it may take up to two years for her new immune system to become as strong as that of a healthy young adult.
A couple of weeks ago, Amri received good news when her doctors cleared her to return home to Texas to continue her recovery there. Watch a brief video of Amri as she urges Americans to stay home to protect young people like her and the other vulnerable residents of The Children’s Inn.
Since the coronavirus outbreak hit the United States, only those children and young adults whose treatments cannot wait are staying at The Children’s Inn so they can participate in potentially life-saving NIH clinical trials.
To keep its vulnerable residents safe during the pandemic, The Children’s Inn has implemented strict safety measures that include suspending all visitors and volunteers, keeping only essential staff caring for families at the facility while administrative staff telework, replacing community buffet-style meals with individually packaged meals, ordering groceries for delivery to help families avoid unnecessary trips to the store, enhancing cleaning standards, having families and staff wear masks when they leave their rooms and practicing social distancing at all times. Family and young adult activities are being provided via social media and web-based tools to allow residents to participate from their rooms.
“We are doing everything we can to keep everyone as safe as possible,” says Jennie Lucca, CEO of The Children’s Inn at NIH. “We are operating with bare-bones staff and without the support of the more than 200 regularly scheduled volunteers to keep our vulnerable children and young people safe. During the pandemic, staying home is simply the best thing we can do to help reduce the spread of this dangerous virus that poses a risk to so many with underlying health conditions. That includes the children and young adults we serve and many, many more living in communities throughout the United States.”
To support The Children’s Inn at NIH, a nonprofit organization that provides free lodging to more than 1,500 children, their families and young adults from across the United States and the world every year, please make a donation. Your contribution allows more children and young adults to comfortably stay at The Children’s Inn free of charge while they participate in groundbreaking medical treatments as part of NIH clinical trials that bring about new treatments and cures to benefit generations to come.