Eight-year-old Jordin has sickle cell disease, a disorder that means her red blood cells are misshapen, which can lead to reduced blood flow to many parts of her body, and frequent hospital stays at CHOC for pain management. But for her, it’s also been an opportunity to fundraise and raise awareness of sickle cell disease.
CHOC is proud to be part of the Children’s Miracle Network Hospitals family, a national network of corporate partners and programs whose fundraising allows CHOC to help kids like Jordin, and offer exceptional care and state-of-the-art treatments and technology for patients and families with the most complex needs in pediatric medicine.
Recently named a Children’s Miracle Network Hospitals Champion, Jordin will spend the next year traveling the country and raising awareness of the needs of children’s hospitals throughout the nation, including those of CHOC. Each year, one child from every state is honored with this ambassador position.
Jordin’s ambassador tour kicked off with a trip to Washington, D.C. where Champions shared their inspiring stories to encourage charitable support for children’s hospitals, including attending Senate meetings on Capitol Hill. The end of her year as ambassador will conclude with a trip to Orlando, Fla. as the ambassadors reunite to thank and further inspire those who support the children’s hospitals the Champions depend on.
Jordin’s history with CHOC runs deep. When she was 3 years old, Jordin was admitted to CHOC for complications of sickle cell disease. Her care team suspected acute chest syndrome, one of the most common causes of death in sickle cell patients. Due to technology constraints at the time, tests were sent offsite for evaluation and getting results could take up to a week.
As they awaited the results, Jordin’s family made a commitment to help other kids fighting sickle cell disease.
“During that week, we realized that we needed to step up and do something for CHOC, so no other families had to wait this long,” said Jordin’s mom, Karen.
Karen recruited family and friends with event planning, social media and fundraising experience to form Jordin’s Journey, a group of people dedicated to fighting sickle cell disease, and helping Jordin. They raised $32,000 to secure a Sebia Electrophoresis machine, which helps monitor and treat blood disorders efficiently at CHOC.
When she grows up Jordin wants to be a doctor so she can help other children the way she’s been helped.