Play Live Radio
Next Up:
Available On Air Stations
Watch Live

San Diego Child Only Known Person In World With Rare Form Of Disease And More Local News

 March 5, 2020 at 3:00 AM PST

Speaker 1: 00:00 It's Thursday, March 5th I'm Priya Shree there and you're listening to San Diego news matters from KPBS coming up. A San Diego kid has been diagnosed with a new type of rare disease so far. Scientists say he's the only known person in the world with it and the parents say they're happy to have answers. It was kind of more of a perspective for us to understand that and more San Diego news stories coming up. Speaker 2: 00:36 [inaudible] Speaker 1: 00:36 early results show proposition 13 California is $15 billion school construction bond losing at the polls. The measured trails with 56% of voters saying no, but millions of ballots still need to be counted. David Wolf is with the Howard Jarvis taxpayers association, which opposed the measure. Speaker 3: 00:55 We again, continue to be cautiously optimistic. We're not over-confident just because you know, we don't know how many late absentee votes are out there. Speaker 1: 01:03 Prop 13 was the only statewide initiative on the ballot. It is not connected to the historic property tax measure of the same name from the 1970s if approved this new prop 13 would pay for repairs and upgrades that aging public schools and colleges. It would set aside $9 billion for preschool and K through 12 schools, $4 billion for universities and 2 billion for community colleges. It's looking like San Diego voters will have a Democrat and a Republican to choose from in the November runoff for San Diego. Mayor KPBS Metro reporter Andrew Bowen says there is a clear favorite Speaker 4: 01:38 democratic assembly. Men Todd. Gloria is holding a commanding lead in the mayoral primary with more than 40% of the vote is likely as deponent in November. His city Councilman Scott Sherman, a Republican who has just over 25% Councilwoman Barbara Brie is a few thousand votes behind Sherman despite vastly outspending him speaking to reporters Wednesday morning, Gloria said he plans to continue with the same message that got him this far. Speaker 5: 02:03 We kept a very positive campaign, a spoken out on me and my vision for the city. I think this should be a discussion of the ideas and the solutions that we have, uh, to the big problems facing, uh, the city. Uh, that will continue to be our strategy going forward regardless of who our opponent is. Speaker 4: 02:18 Given his strong advantage and votes, fundraising and endorsements. The mayor's race is Todd Gloria's to lose. Andrew Bowen, KPBS news, Speaker 1: 02:26 California researchers have found that oxygen levels and water temperatures play a key role in the health of deep sea fish populations. KPBS environment reporter Eric Anderson says San Diego, when Monterey Bay scientists studied fish on the floor of the Gulf of California. This is an example of some of the video that we told you. A Gallo postdoctoral researcher at the Scripps institution of oceanography points to the footage from the sea floor on the Gulf of California just off the Mexican coast. The pictures come from a remotely controlled, Speaker 6: 03:00 we have two lasers that are yellow says, researchers are trying to gauge the impact of a warming ocean on fish. For the really big question that we're trying to understand is how sensitive deep sea communities and in general ocean communities are going to be to these changes. General surveyed the Northern Gulf, which is closer to normal ocean conditions and the Southern Gulf, which has one of the planet's most extreme low oxygen ocean zones. Gallo says two factors had the biggest impact on fish. Temperature and oxygen are really contributing the most to the story. The findings will help scientists understand changes in other locations. Speaker 7: 03:36 The body size of animals will get lower as the ocean warms. Speaker 6: 03:41 Lisa Levin is a biological oceanographer. She says, scientists already expect certain outcomes from climate related changes. Speaker 7: 03:48 The oxygen minimum zones are expanding as the ocean warms. Speaker 6: 03:52 The research findings are published in the current edition of the journal Marine ecology progress series, Eric Anderson, KPBS news Speaker 1: 04:01 measure C is still trailing behind the two thirds voter approval needed to pass the measure would raise hotel taxes to fund a convention center expansion, homeless services and road repairs. KPBS reporter Matt Hoffman spoke to leading mayoral candidates about what's next Speaker 8: 04:17 for years. San Diego has tried and failed to expand the convention center and this latest attempt appears no different outcome. A measure C is personally disappointing state assemblyman and leading candidate for mayor Todd. Gloria still supports expanding the convention center. He says combining an expansion with something other than money for homeless services and road repairs might work if it's not this particular formula, a combination of priorities. Maybe there's another set that San Diego can support, but San Diego city Councilman and candidate for mayor Scott Sherman says, enough is enough. Speaker 6: 04:48 We've tried the hotel tax went like three times now and it doesn't seem to be working so I think it's time that we look at other options. Speaker 8: 04:54 Sherman also still wants to see an expansion of the convention center, but he wants to look into partnering with a private developer instead of trying to get a two thirds majority from voters because it's just tough to get past that threshold. One thing is clear. Both leading candidates for mayor plan to pursue a convention center expansion. Matt Hoffman KPBS news, Speaker 1: 05:13 the growing Corona virus impact in the U S is causing fear and confusion. San Diego County officials tapped. It's two one one call center to answer the public's questions about the disease, but KPBS health reporter Taryn mento says, calls are barely trickling in. Speaker 6: 05:30 How do I know if I'm at risk? What should I do if I think I've been exposed to a virus? Speaker 9: 05:37 Adrian Karsten says, those are the questions a handful of callers asked to one one operators about novel Corona virus. The nonprofit resource line received only 10 inquiries. Karsten says that's probably because the info is regularly updated on the county's website, but two, one, one is ready for concern. Callers who may still want to hear a reassuring voice over the phone, Speaker 6: 05:58 let them know that we have information that's approved and verified by our leadership here locally. That uh, right now there is no cause for panic. People who think they may be infected with novel coronavirus our urge to first call their doctor. Speaker 1: 06:14 Karsten says two and one will help callers find one if they don't already have a provider. Taryn mento KPBS news, a Placer County patient is the first in California to die of coven 19. The disease caused by Corona virus cap radios, healthcare reporters, Sammy Kayla has the latest. Speaker 9: 06:31 This was an elderly patient with underlying conditions plus or County officials say the patient was likely exposed on a princess cruise from San Francisco to Mexico. The patient arrived at Kaiser Permanente Roseville and an ambulance. On Friday. Officials have identified 10 healthcare workers and five emergency responders who interacted with the patient. Those people are now in quarantine and are being monitored for symptoms. Officials believed the patient had limited exposure to the community between the crews and the hospital. They declared a local public health emergency earlier this week joining a handful of other California counties in Sacramento. I'm Sammy Yola one KPBS. Speaker 1: 07:08 I met the [inaudible] family a few years ago. They were still searching for a diagnosis for their son. Damien's mysterious disease, KPBS science and technology reporter Shelia Celani says San Diego scientists gave them an answer and now can confirm Damien could be one of a kind. Speaker 9: 07:27 11 year old Damien. Omer slams his back against his wheelchair as he watched this guitarist slash shredding on the TV. Damien's mom greasy. Omar says he loves to jam out to eighties rock legends at his home in the wind Vista. Do you want more or are you all done? Do you want to get out where you want to go? Where do you want to go? Damien can't walk. Sometimes he needs a feeding tube and he gets [inaudible] help using the bathroom. But he also has lots of fun. While Damien can't communicate, he's always [inaudible] laughing. He just loves being silly, silly noises. Um, he's, he's your typical boy. Damien has a form of [inaudible] congenital disorders of glycosylation or CDG for short. It's a type of extremely rare disease that causes the body cells to malfunction because sugars aren't properly attaching to proteins. But there are over a hundred different forms of CDG because different genetic abnormalities can lead to this poor sugar protein connection. So father Donnie Omar says, for years they didn't have a specific diagnosis. Speaker 6: 08:38 They were calling it CDG X because there was no subtype to it. So, uh, that was, that was kind of uncertainty is kind of a bit of a downer for us because we were like, okay, how do, how do we include ourselves with everybody else in the CDG community? But when scientists Speaker 9: 08:56 at Sanford Burnham previs medical discovery Institute in LA Jolla took on the case five years ago, they were able to find the mutation. Doctors searched for several years to find another patient with Damien's mutation, but they couldn't find one. And after consulting with the national institutes of health, dr say Damien has a new type of CDG. And as far as they know, he's the only person in the world with it. At his lab in LA Jolla genetics researcher Hudson freeze points to a wall filled with numerous photos of children he's worked with who have CDG or other conditions Speaker 10: 09:29 because that's my sister and she's also disabled. And so, you know, I kind of know what it's like for the families to go through all the struggles that they have. Speaker 9: 09:39 Freeze started working with Damien five years ago when UC San Diego doctors turned the case and Damien skin cells over to him. What doctors and freezes lab found is an entirely new gene and a DNA sequence where CDG can develop so they're calling this disease, get for CDG, which refers to that mutated gene in Damien's body that's stopping proteins from being guided to the right place. Speaker 10: 10:02 They have helpers, they have chaperones on the way and with Damien's, one of his chaperones was almost completely gone. Speaker 9: 10:10 Free says this discovery is significant because understanding which mutations lead to CDG can help scientists design more therapies to treat it. Speaker 10: 10:18 What this does is to open up a whole new pathway of thinking for people who said, well, I never thought about possibilities in that group of genes Speaker 9: 10:29 that could open doors for other CDG patients to also get treatment. In Damien's case for, he says there's one drug that he knows of which could potentially help Damien, but it has some uncomfortable side effects. He says the other benefit of finding these genetic mutations is that people can do more family planning if they know the mutation is hereditary and of course failed. These can also get some sense of closure back at the Omar family house. Damian's father Donnie says, that's been huge. Speaker 10: 10:56 It was kind of more of a perspective for us to understand how rare Damien actually is. Uh, that was breathtaking for us because we, we found out something about his specific mutation that nobody else has. Speaker 9: 11:13 It's a special needs. Parents are often left with questions and even with the diagnosis, they'll still want to learn more. We told everybody we take, take it one day at a time. That's all you can do. In the meantime, they think it's important for special needs parents to know they have a community of support and free says he believes his Damien's case gets more publicity. More patients like him will be discovered and could potentially get treated. Shelina chat, Lani K PBS news.

San Diego scientists have diagnosed a patient with a new form of a rare disease - they say he's the only known person in the world with it. And California scientists are seeing how warmer oceans might impact fish communities living near the ocean floor.