We’re also following the flight delays and tomorrow’s impacts after a plane crash at RDU. Plus, Only on WRAL, why a high school student is not allowed to participate in one of the most important events of his life.. and how he and his family are fighting for him to graduate. Watch WRAL-TV at 11 p.m., and search for these and other stories on WRAL.com.

On WRAL at 11: Cooler weather tomorrow morning but we’re about to warm up. When and where temperatures top 90 degrees

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All assets associated with the tag: rare conditions

Rare conditions Coverage

A Durham woman is training to run in the New York Marathon to benefit and bring awareness to the fight she and others have had...

Durham woman living with rare condition training for New York City Marathon

Iris Mustich

Iris Mustich is a Durham woman hoping to run in the New York City Marathon in November in support of those like her who are fighting a rare condition called TSC.

So T S C um is a rare genetic condition. Um And it affects approximately one in 6000 live births. It's actually the leading genetic cause of both epilepsy and autism. Um But um it causes noncancerous tumors to grow through all vital organs in the body. Um And it impacts every individual differently, even identical twins. I'm running in the New York City Marathon for team T S C. So um to raise money for the T S C Alliance. So, the T S C alliance um is a patient advocacy group um for people living with T S C that um has been around for almost 50 years now. It was originally started by a group of moms and has grown like exponentially and they advocate for research um have helped um really get a lot of research going and get drugs approved and also provide support services for people living with T S C. Um And so I'm, I'm running to, to raise money to support their efforts. It's my first marathon. Ok. Um Have you run like five K S 10 Ks half marathon? I've run a few half marathons. Um but um I never really planned to run a full marathon until they said like, hey, you run and you have T S E like, would you wanna do this? So, um it's, it's interesting and I actually, um I had reached out to other like families with T S C asking like, you know, if they had favorite songs or anything that reminded them of their kids or that were there, like, uh reminded them of their journey or things so that I could like, have those songs to listen to while I'm training and remind me of all the different journeys that people have. And so I got a lot of responses. So it's been cool to be able to listen to like the songs that people say, remind them of their journey or of their loved one. Um because, you know, you don't always meet people in person or anything, but it gives you a little bit more of a understanding of what they might be going through. And so I can, you know, I'm not just running for me, but I can think of all of them when I'm running as well.

Durham woman draws inspiration from battle with rare condition

As the world focuses on COVID-19, there is a desperate effort underway to raise awareness about a lesser-known disorder. A Raleigh woman's son has MPS1 or Hurler's Syndrome - a rare genetic disorder. 

SAYS THE INVESTIGATION WAS LAUNCHED AFTER 213 SEPARATE HOTLINE TIPS. >>> AS THE WORLD FOCUSES ON COVID-19 THERE, IS A DESPERATE EFFORT TO RAISE AWARENESS ABOUT A LESSER-KNOWN DISORDER. TODAY IS MPS AWARENESS DAY. AND A RALEIGH MOTHER IS MAKING SURE EVERYONE KNOWS IT. >> Reporter: RECURRING EAR INFECTIONS, THEN SINUS INFECTIONS. A SLIGHT SPEECH DELAY DISMISSED BY DOCTORS AS NOTHING SERIOUS. TAKEN INDIVIDUALLY, THE SYMPTOMS WEREN'T UNUSUAL OR CONCERNING. IT WASN'T UNTIL JACOB'S PEDIATRICIAN SUGGESTED GENETIC TESTING THIS PAST FALL THAT HIS MOTHER, ALICIA, REALLY BEGAN TO WORRY. >> OKAY ISSUE? WHAT ARE YOU LOOKING FOR? WHAT COULD YOU FIND? >> Reporter: IN MARCH, DOCTORS DIAGNOSED JACOB WITH NPS ONE OR HURLER SYNDROME, A RARE GENETIC DISORDER. >> AND IT SAYS LIFE EXPECTANCY, TEN YEARS OLD. >> Reporter: DEVASTATING NEWS TO. AND ANOTHER PUNCH WHEN SHE LEARNED SHE AND HER HUSBAND ARE CARRIERS OF NPS. NEITHER HAVE THE DISORDER. NO ONE IN THEIR FAMILY DOES. THEY COULD NEVER HAVE KNOWN THEY WOULD PASS IT ON TO THEIR SON. >> IN HINDSIGHT, EVERYTHING THAT'S EVER BEEN WRONG WITH HIM IS RELATED TO THIS. >> Reporter: THEY BEGAN TREATMENT, A STEM CELL TRANSPLANT WHICH WILL MEAN MONTHS IN THE HOSPITAL. IT LIKELY WON'T SAVE HIS LIFE BUT WILL EXTEND IT AND ALLOW HIM A BETTER QUALITY OF LIFE. >> SITTING AROUND AND CRYING ABOUT IT ISN'T GONNA SAVE MY KID. ULTIMATELY, THIS WILL NOT SAVE HIM EITHER. BUT IF WE CAN RAISE ENOUGH AWARENESS TO MAYBE ONE DAY, MAYBE NOT IN HIS LIFETIME, BUT NOBODY SHOULD HAVE TO GO THROUGH WHAT HE'S ABOUT TO GO THROUGH, WHAT WE'RE GOING THROUGH. IT SHOULD BE AVOIDED. >> JACOB IS ADORABLE, HIS SMOM SO INCREDIBLY STRONG AND WANTS TO MAKE SURE EVERYONE KNOWS ABOUT THIS. THE NATIONAL NPS SOCIETY IS HEADQUARTERED IN DURHAM. SOME STATES SCREEN AT

Raleigh mother working to raise awareness of son's rare condition

Raleigh mother working to raise awareness of son's rare disorder

A Florida woman suffers from a rare condition that leaves odors "stuck in her head."



Rare conditions Coverage

Durham woman living with rare condition training for New York City Marathon

Durham woman draws inspiration from battle with rare condition

Raleigh mother working to raise awareness of son's rare condition

Parosmia: Rare condition leaves odors 'stuck' in Florida woman