News Summary
In Jacksonville, Florida, young Harlow Higbee is defying the odds after being diagnosed with Pyruvate Dehydrogenase Complex Deficiency (PDCD). Initially given a dire prognosis, Harlow has made incredible strides such as crawling and is approaching her fourth birthday. The Higbee family has turned their struggle into a mission, raising significant funds for PDCD research, including an upcoming clay shoot fundraiser. Their story highlights resilience and the importance of community support in overcoming challenges posed by rare diseases.
Jacksonville Family’s Journey of Hope with Toddler’s Rare Disease
In sunny Jacksonville, Florida, a brave little girl named Harlow Higbee is beating the odds that were stacked against her. Diagnosed just before her first birthday with a rare and daunting condition known as Pyruvate Dehydrogenase Complex Deficiency (PDCD), Harlow has captured hearts and inspired her family, friends, and community with her remarkable resilience.
PDCD is a mitochondrial metabolic disease that hinders the body’s ability to convert food into energy. This unfortunate condition leads to dangerous levels of lactic acid building up in the body’s organs, which can severely affect health. Often, this disease has a particularly aggressive effect on the brain, followed by the muscles, and in serious cases, it can trigger seizures.
When Harlow’s family first learned of her diagnosis, doctors delivered a heartbreaking prognosis: they estimated that she likely wouldn’t see her fourth birthday. However, this spirited toddler is now set to celebrate her fourth birthday this upcoming June, and her achievements are nothing short of a miracle!
Recently, Harlow achieved a significant milestone—she began crawling! This is a fantastic accomplishment, showing just how determined she is to overcome the challenges presented by her condition. Despite the earlier grim predictions, Harlow continues to inspire everyone around her, including her loving family.
A Mission to Educate and Fund Research
The Higbee family has transformed their personal trials into a mission to create awareness and drive funding for research into PDCD. They have successfully raised nearly $50,000 through annual clay shoot fundraisers aimed at supporting vital research for this rare disease. The upcoming event, titled “Hope for Harlow, Clays for a Cure”, is set for March 25 at the Jacksonville Clay Target Sports venue, and promises to be a fun-filled day for participants.
Funds raised during this engaging clay shoot will aid the Hope for PDCD Foundation, which works to support research into gene replacement therapy. This promising avenue is being spearheaded by Dr. Steven Gray at the University of Texas Southwestern, who posits that if the missing gene can be replaced in affected children, comprehensive treatments could soon follow.
Building a Bright Future for Harlow
Despite the initial challenges of caring for a child with a serious illness, Harlow’s family has found hope where they initially thought there was none. Amidst the love and support of her family, Harlow enjoys playing with her big sister, Cassidy, and will be starting pre-kindergarten this year—a new chapter filled with possibilities!
The Higbee family is wholeheartedly committed to raising awareness for PDCD and is advocating for its inclusion in newborn screenings. Early detection can be pivotal in managing the effects of this rare disease, and the family aims to ensure that no other families face the same struggles they have encountered.
Join the Efforts to Make a Difference
The cost to participate in the upcoming clay shoot fundraiser is $800 for a team of four or $225 for individual participants. The entry fee includes all necessary gear—food, ammunition, clays, a cart, and a delicious lunch—ensuring a great experience for all involved. With the family’s continuous efforts to secure additional sponsorships and participants for the event, every little bit counts in the fight against PDCD.
As they navigate this unique journey, the Higbee family remains a symbol of love, hope, and perseverance. To see Harlow’s spirited fight against her rare disease is a timely reminder of the power of community and determination. Mark your calendars for March 25, and let’s come together to celebrate Harlow’s journey and work toward a brighter future for all those affected by PDCD!
Deeper Dive: News & Info About This Topic
HERE Resources
Golf Community Unites for Batten Disease Awareness
Additional Resources
- First Coast News: Hope for Harlow
- Wikipedia: Pyruvate Dehydrogenase Complex Deficiency
- First Coast News: Fundraiser for PDCD Research
- Google Search: Rare diseases
- Hope for PDCD Foundation
- Google Scholar: Mitochondrial metabolic diseases
