Local Parents Caring for Children with Rare Conditions Look for Answers
Writer / Megan Arszman
When the Hoffman family was anticipating a little girl, they never imagined the struggles that would be born with her. At just six years of age, Londyn has fought more battles than most adults do, after being diagnosed with a rare genetic mutation and rhabdomyosarcoma, a rare, fast-growing tumor behind her eye. After undergoing treatment for rhabdomyosarcoma, she was then diagnosed with Guillain-Barre Syndrome, a disorder where her immune system attacks her nerves.
Now, half a year after the Guillain-Barre diagnosis, she can be seen on the sidelines cheering for her big brother, Lincoln, and the Westfield Middle School football team. Her spirit is one that lights up the entire building, not just the room. Londyn’s fight has caught the attention of local news outlets.
“Londyn is a child with a disability, period. There are a lot of other awesome families in Westfield that also have children with disabilities that are huge advocates for whatever their disease or syndrome is, whether it’s cancer or developmental delays,” Jenna says. “There are so many great families in our community dealing with the same type of issues that might need to know how they can get help. We were connected to the Vollmer family through baseball and our older sons playing together, and they have a younger son, Graham, with spinal-muscular atrophy, or SMA. Their family has also been very supported by Westfield sports, because of his big brother, and the community, and his mom is a big advocate for the disease and bringing awareness to help raise money.
“Many people feel like whenever they see Londyn, or they see Graham, they smile,” Jenna adds. “Londyn is such a happy child, except when she’s really feeling sick. But who could continue to hold a smile when you’re going through chemotherapy?”
Because Londyn’s story has been shared a lot lately, Jenna hopes to use her daughter’s story to help others in the community.
“We want to put aside the cancer diagnosis and focus on children with disabilities in Westfield and what their families can do to help them live more normal, happy lives,” she says.
School and Church
Both mothers praise the Westfield Washington School District for working with the children and continuing to grow in their knowledge. “Graham is in a typical classroom and is doing great,” says Adrienne Vollmer. “The school has been great about providing for his needs.”
“The developmental preschool within the Westfield school district has been amazing,” Jenna adds.
Northview Church caters to children like Graham and Londyn in terms of accessibility. The Northview Kids Ministry has allowed for Graham and Londyn to be a part of a community of their peers while growing in their relationship with God.
Both Graham and Londyn are Riley Kids, and it’s no surprise to Hoosiers the reach that the children’s hospital has to help children of all ages with all sorts of disabilities and conditions. Working with doctors and becoming close with nurses and aides helped both mothers to learn how to help care for their children while becoming advocates for their children’s care and livelihood.
“One of the most important things for us was to get in contact with a network of other parents who had children with SMA,” Adrienne says. “But, I know that’s not always easy when you have a child like Londyn who doesn’t have a specific diagnosis. But, even looking for other parents of children with special needs gives you that feeling that you’re not alone.”
While social media has gotten a bad reputation lately, both Adrienne and Jenna are grateful to the community that they have found on Facebook: Indy Parents Special Needs Community. The group offers connections for equipment pools in the state, tips and advice and just a place to vent.
“The biggest thing I try to encourage parents with is to have hope and take it one day at a time and hold onto that hope for your children,” Adrienne says.
You can follow along with Londyn’s story on Facebook at facebook.com/londyntime.