Rare Disease Community Shares Unspoken Understanding at The Children’s Inn at NIH
Two families staying at The Children’s Inn at NIH in Bethesda have found comfort meeting others in the “rare disease community.”
Lydia Mzame came to The Inn from Mombasa, Kenya to help her 13-year-old son who’s suffered from sickle cell disease since he was four months old.
Mzame came with her husband and their two other children. Although the family is thousands away from their country, Mzame feels comforted by the fact that her son is around children who understand him.
“[We’ve found a community of] people, not with similar challenges, but with a similar fabric […] of a certain disease that is running in their families and it’s affecting the family, and just being there and just being a support to one another is amazing.”
Many of the children staying at The Children’s Inn at NIH, like Mzame’s son, have rare diseases. When the children get to The Inn, there’s a sense of understanding among the children.
When Mzame’s son is at home in Kenya, Mzame says that many children often notice that he’s different.
“Coming from a place where people don’t understand what you’re son is going through, they look at him because he constantly has yellow eyes,” said Mzame. “They look at because he’s not putting on weight, he sometimes loses weight.
Mzame called The Children’s Inn “a home away from home” for her family because at the Inn “no one looks at you differently.”
The Abram Family Seeks Answer to Why Abram is Getting Fevers
Julia Dotson, from St. Louis, Missouri, has been bringing her 8-year-old son Abram, 8, to The Inn for clinical trials since he was a baby.
“When we started coming a couple of years ago, we were specifically here for a fever syndrome,” Dotson said.
Abram would get really high fevers between 102 to 106 degrees. However, no doctor has been able to answer why he gets these fevers. During the family’s latest stay at The Children’s Inn, Dotson said doctors may have found what’s been affecting Abram’s immune system.
Dotson said, “Very recently actually, we ended up finding out that he was carrying a change on a gene that is impacting his immune system.”
Even with this update, Dotson said doctors still aren’t sure if this is why Abram gets fevers.
“We still don’t know if that is part of the fever syndrome or not or something extra, which for some reason tends to happen with kids who have a rare disease,” said Dotson.
Like Mzame, Dotson said that growing up different has been challenging for Abram.
Dotson said, “Some of the kids that are here, are visibly ill and there are other kids that are here that don’t look all that sick. In the ‘real world,’ that can be a challenge and that can be hard because people don’t understand what you are facing.”
Unlike in “the real world,” Dotson said that the children at Then Inn don’t question Abram. In the past, Abram has been bullied by children if he feels too tired to play. Even at 8-years-old Abram notices when people stare at him when he’s needed to use a wheelchair.
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Families Find Strength During Hardship at The Children’s Inn at NIH
The families at The Children’s Inn at NIH have shown true strength for their loved one with a rare disease.
Mzame said that one of the cures for sickle cell disease is a bone marrow transplant. The doctors found that their 8-year-old daughter’s bone marrow is a match. Mzame’s son underwent chemotherapy to prepare for the transplant procedure, which hasn’t yet happened.
Although she’s young, Mzame said her daughter has been eager to help save her brother’s life. Mzame admitted she underestimated an 8-year-olds ability to understand the gravity of the disease.
Mzame recalls her daughter saying, “I’ve seen my brother suffer with sickle cell disease, and I wouldn’t want to lose him, so I am ready to give him my bone marrow.”
The Dotson family have also become advocates for Abram. The Children’s Day at NIH celebrated on Thursday, February 28th, which Dotson said was a perfect day to raise awareness about rare diseases to lawmakers.
The Dotson family also tries to remind each other that although life can be challenging and sad, choosing “joy” is essential.
“Choosing joy and celebrating that we have a place that’s going to give us hope, and eventually lead us to answers and impact many more people [is important],” said Dotson.
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