How We Help
Helping sick children with rare genetic diseases to receive the genetic testing they need and in turn to receive the correct medical diagnosis and personalized treatment is a collaborative process.
The Help Undiagnosed Children Foundation (HUCF) builds alliances with a variety of groups, organizations, and medical facilities to find sick children in medical and financial need of genetic testing. Our outreach also includes direct contact with parents of sick children who may well have a genetic disease. When rare disease diagnosis occurs in childhood, those affected have the very best chance of survival and a more meaningful life.
Dr. Wenhui Laura Li, HUCF Founder, reviews the sick child’s specific genetic testing needs as submitted by their doctor and HUCF evaluates the family’s financial need. HUCF then coordinates with the organization/patient’s family for the specific genetic testing to be done by a certified testing laboratory at no cost to the patient’s family. Once the testing results are available, they are forwarded to the patient’s physician to arrive at a medical diagnosis and a
more targeted treatment plan to relieve the young patient’s suffering. In this way, they have the chance for their best quality of life.
As rare genetic diseases know no national boundaries, there are millions of children affected all over the world. The Help Undiagnosed Children Foundation has provided genetic testing for sick children in need in the United States, India, and Jordan. This has even extended to testing for a sick toddler to determine if they have the same genetic disease as their older sibling.
The Help Undiagnosed Children Foundation participated in the Children’s Tumor Foundation (CTF)’s Shine A Light NF Walk held on October 21, 2023, in Long Beach, California. Through this event, HUCF was able to talk directly with families of children who have, and might have, neurofibromatosis (NF), a rare disease which causes tumors to grow on nerve cells, as well as meet doctors who treat those affected by NF and its variants. It was also a wonderful opportunity to support the Jemente family that HUCF is helping and who also participated in this event. The family’s 5-year-old daughter had already been diagnosed with NF1. HUCF was able to step in this year to cover the genetic testing for their 2-year-old daughter who also had symptoms, only to discover that the youngest has a rare variant of NF, which is known as schwannomatosis. Further help from HUCF is also available for the family through genetic testing for the parents at the request of the daughters’ doctor. In this way, the doctor will have a fuller picture of the genetic issues for the entire family so they may all move forward to obtain the best medical treatment and outcomes for all family members.
