If there is any message that Kate Kelly could share with her fellow rare disease caregivers, it’s this: You’re not alone.
“There are moments when you get caught up in the challenges of being a caregiver. It’s hard, and sometimes it feels lonely. But there’s help out there. There are resources and connections you can make,” she says.
Kate and her family – husband Jesse Craddock and their sons, James and Colby – have found that support and sense of community in The National Organization for Rare Disorders (NORD®).
They first connected with NORD in 2020, when James, now 4, was born in the early months of the COVID-19 pandemic. Newborn screening led James’ doctors to order further testing, which resulted in a diagnosis of phenylketonuria (PKU). PKU is a rare metabolic disorder that can cause brain damage, seizures, behavioral issues, and delayed development if not diagnosed early and managed with a low-protein diet.
“On top of being a new mom during COVID, it was a lot to go through to get a diagnosis I had never heard of,” Kate recalls.
NORD helped Kate and Jesse face their new reality of parenting a child with a rare disease – meeting a need for support that became even more important two years later with the birth of their second son, Colby, also diagnosed with PKU.
“We have leaned on NORD for copay assistance for the boys’ medically necessary formula. My husband has used NORD to stay up-to-date on research, and I look to NORD as an advocacy resource to help me lobby lawmakers to make sure all kids have access to food and medicine that they need,” Kate says.
Today, James and Colby are active little boys and best friends who “go everywhere together” and love to play outside, especially on the beach. They are developing their own personalities: “James is smart, kind and sensitive with a great sense of humor. Colby is a force to be reckoned with – he’s also very smart, as well as strong-willed, and he is the most loving and affectionate member of our family, always quick with a hug or kiss,” Kate says.
Kate and Jesse face the worries that all parents feel about their kids, with the added worry of monitoring their boys’ diets. They work to achieve a balance between teaching them to be careful about what they eat and their desire for PKU to not define the boys’ identities and dictate every decision they make.
“Feeling like we have support through our medical team and the connections we’ve made through NORD has made these conversations so much easier and has allowed us to keep them safe and healthy,” she says.
Caring for children with a rare disease can feel isolating. With NORD, Kate knows her family isn’t alone.
“It’s hard for people to understand what we need to survive,” she says. “Knowing that NORD is out there leading conversations, raising awareness of rare disease, and advocating for policies is so important to our family when we have not been able to be out there advocating ourselves.”
November is National Family Caregivers Month, and NORD is proud to provide year-round support, including respite care, to rare disease caregivers. Your gift to NORD ensures that families can access the care and support they deserve. Make your gift today!
