A Yulee family shares their toddler son Carson’s cystinosis diagnosis after months seeking answers. Now they’re raising awareness and funding research through “A Cure for Carson” charity golf tournament.
Read full article: ‘A Cure for Carson’: Yulee parents turn rare diagnosis into mission for awareness and researchJacksonville Zoo says it’s working with officials to strengthen traffic safety measures surrounding the area Read full article: Jacksonville Zoo says it’s working with officials to strengthen traffic safety measures surrounding the area ‘Taking advantage of the system’: Sheriff Waters says changes will be made to prevent future false claimsRead full article: Former JSO detective says new policy to prevent false overtime claims could be difficult to enforceJudge denies motion to prohibit ‘release of confession’ for man accused of killing 2 people in St.
Johns County Read full article: Judge denies motion to prohibit ‘release of confession’ for man accused of killing 2 people in St. Johns CountyCarson and Emily Hughes in the hospital.– In the Hughes family’s living room, 2-year-old Carson is doing what toddlers do — exploring, playing and keeping his parents close by.His parents say he’d rather run around with his shirt off, but they had other plans.But behind the toddler energy is a medical routine built around a rare genetic disease most families have never heard of. Carson has cystinosis, a disorder that causes cystine to build up and form crystals that can damage organs over time — including the kidneys and eyes.Carson’s parents, Emily and Daniel Hughes, said the first signs appeared as Carson got close to his first birthday. Daniel said Carson started falling off his growth curve and became extremely thirsty, with frequent vomiting.“For lack of a better term, the blood work lit up like a Christmas tree,” Daniel Hughes said.“Definitely the most difficult thing we’ve ever been through,” Emily said. “It was probably a very dark time for all of us.” After weeks in the hospital and months of specialist visits, genetic testing provided the diagnosis: cystinosis. The Cystinosis Research Foundation says it occurs in 1 in 100,000 to 200,000 births in the United States. The Hughes family said they don’t know of anyone in the region being diagnosed.Emily said Carson’s lab results reflected how severe the condition was at diagnosis. “A normal person would be .16 or below,” she said. “When Carson was diagnosed in August, his came back at 14.8.”.Carson receives ongoing treatment, including medication every six hours and feeds through a tube, as his parents work to manage his cystine levels and protect his organs but said the damage is already done.And Emily said their focus now is not only on Carson’s care, but also on raising awareness for rare diseases and the need for research.“This is what I was put on this Earth to do — to help raise awareness for not just the cystinosis, but rare diseases in general,” Emily Hughes said. The family is hosting a charity golf tournament, “A Cure for Carson,” on Saturday at Trident Lakes Golf Club in Kings Bay, Georgia.Chris Will has joined the News4JAX team as a weekend morning reporter, after graduating from the University of Florida in spring 2024. During his time in Gainesville, he covered a wide range of stories across the Sunshine State. His coverage of Hurricane Ian in southwest Florida earned a National Edward R. Murrow Award.Chris started in 2024 and is one of the youngest members of the News4JAX team. After graduating from Fletcher High School, Chris continued his passion for videography by capturing high school sports. Chris hopes to continue elevating his skills so he can serve the community to the best of his ability.Baptist Health confirms Cigna contract termination. Here’s what that means for patientsVilano Beach residents raise traffic, safety concerns at St. Johns County meetingEmpty Southbank riverfront site could finally transform after years of delays'$15K?!': Older Jacksonville residents share how much they paid for their first homeJacksonville naval forces stay ready despite US-Iran ceasefire pauseCouncil member addressing Zoo Parkway concerns after 2 school bus crashes within one weekDCPS superintendent calls school bus crashes ‘tragic’Shanna Gardner & Mario Fernandez will now be tried separately in Jared Bridegan murderBelow-normal season predicted for Atlantic hurricanes, but it only takes one to make an impactJacksonville sheriff picking up order at Home Depot also nabs man accused of stealing‘At least 8’ students medically assessed after another school bus involved in minor crashPart 2: Mighty Microgreens with the help of David Bane and Five Points Farm
Cystinosis Charity Golf A Cure For Carson
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