Many things make 12-year-old Jariah remarkable. She excels in school, plays the violin and piano, and helps her mom around the house. What’s also remarkable are the challenges she’s overcome along the way. She’s been hospitalized countless times and had her spleen and gallbladder removed. Jariah was born with sickle cell disease. But with her determination and the expert care provided by Children’s Minnesota, she never lets the disease define her.
Living with sickle cell disease
Jariah has been a patient in the Children’s Minnesota hemoglobinopathy and sickle cell program since shortly after she was born. Sickle cell disease is a life-long, genetic condition that changes how red blood cells are made and work in the body. It affects nearly every organ and needs ongoing medical management.
Pain episodes are a major symptom of sickle cell disease. They happen when the sickle-shaped red blood cells clump and block blood flow – causing intense pain. Jariah had her first pain episode at only 8 months old. She’s had countless more since.
Complications of sickle cell disease
Jariah also had her spleen and gallbladder removed at age 10 due to complications caused by sickle cell disease. Without a spleen she’s at a higher risk for infections. This means she’s on daily antibiotics until age 15 and needs IV (intravenous) antibiotics for every fever. In addition, she takes daily medication for asthma – which can be more severe due to sickle cell disease.
All of this has added up to a lot of hospital and clinic visits in her 12 years. Jariah’s mom, Rae, is grateful her daughter has such a dedicated care team.
“I don’t want to go anywhere else but Children’s Minnesota,” said Rae. “They are so helpful and warm. She’s in and out so much, she knows most of the nurses, and they know us. I’m blessed she has such a great team.”
That care is more than medical. When Jariah is in the hospital, she loves when Bingo comes on Star Studio, the in-house TV channel at Children’s Minnesota. She even drew a picture for The Dude, one of the hosts of Star Studio.
One of the family’s favorite memories was meeting a Vikings player at Children’s Minnesota and going to see a game! Jariah is a huge Vikings fan – she has Vikings socks, shoes and a jersey with her name on it.
Overcoming challenges
Jariah does more than cope with sickle cell disease. She is determined to do anything she can to improve her condition and live life to the fullest.
Jariah excels in school. She cries when she has to miss class because of a pain episode or illness. When she’s discharged, “She’s at the kitchen table studying to catch up,” said Rae.
Jariah also plays violin, piano and is in an orchestra. She’s performed at Orchestra Hall in Minneapolis and local nursing homes.
“Jariah is so motivated to be at school and amongst her friends. She works hard to maintain normalcy,” said Cecily Wegmann, DNP, APRN, CPNP-PC, an advanced practice provider in the cancer and blood disorders program. “We are always impressed by her positivity and dedication to her health, inside and outside of the hospital.”
Strength in family
Jariah gets a lot of her strength from her mom. An incident a few years ago left Rae with complex medical needs. She had Jariah after the incident.
“I believe she was sent to me as a blessing. When I see her in pain because of sickle cell and pushing forward, it keeps me going,” described Rae.
Rae says Jariah wants to be a pediatrician one day so she can help kids like herself.
Donate to support kids like Jariah
When you donate to the Shine Bright for Kids fundraiser this September, you help kids like Jariah. Your gift directly supports the cancer and blood disorders program at Children’s Minnesota. We rely on your donations to surround every child with the most extraordinary care: highly specialized, deeply compassionate and designed to give families strength when they need it most. Donate now at childrensmn.org/shinebrightforkids.
