Corey Chambers Real Estate Newsletter August 2024 | The California Home

The California Home
The California Home

Brother… it’s Hot & Not Just Outside!

RED HOT Opportunities!

You don’t have to be the weather service to predict the weather this time. We all know… it’s the hottest time of the year. But that’s not all that’s hot. This is the season to buy and sell homes.

This is GOOD for most reading this, but there will be some exceptions. There always are. An example could be selling a house and making it out great, meaning a buyer pays a bit more than they would have not too long ago. And in some areas, the opposite happens. The Seller does not make out that great, but the buyer does. Most homeowners who do not have to know this will hold back on buying or selling. That will, of course, impact supply and demand. Results right now?

How does this impact you? Well, it is a HOT time to invest in real estate. Single-family, multi-family, even lofts. If you didn’t get the memo, here is a particular clause from our Buyer and Seller Agreements of our VIP Client Program, enabling past clients to create additional wealth through real estate. 

VIP CLIENT PROGRAM: Seller _ does OR _ does not wish to participate in Broker’s VIP Client Real Estate Investor Program (REIP), whereby Seller will receive notices of free real estate investor training and notices of real estate investment opportunities by mail, email or phone at times when investment opportunities arise. The Seller may opt out of The REIP at any time. The Seller is never obligated to invest in real estate. So, if you or anyone you know likes making money in real estate using other people’s money, please contact The Corey Chambers real estate team immediately. While these HOT investment opportunities are available. Making gains in assets and wealth is nice! We especially like it because it allows us the opportunity to GIVE more. How about you? 

As you probably know, we donate a portion of our income to some AMAZING, worthy causes, like Children’s Hospital Los Angeles. It’s one of the country’s leading non-profit children’s hospitals. This year we are on a mission to raise $25,000 for CHLA. Their work in helping kids fight through and survive nasty debilitating diseases like cancer, non-Hodgkin’s lymphoma, and leukemia, as well as their work in other life-threatening childhood diseases.

At CHLA, they have performed first-of-its-kind surgeries to save local kids! As the leading not-for-profit hospital in L.A., you probably know they need sponsorships and donations to continue their leading-edge care and keep family expenses to a minimum. We are committed to donating a portion of our income from home sales to this worthy cause. So, YOUR REFERRALS really do HELP THE KIDS…

Who do you know is considering buying or selling a home or investing in real estate? Could you refer me to my team? Not only will they benefit from our award-winning service, but the kids at CHLA will also benefit. So call or pass my number on to anyone you know considering buying or selling. 

My number is 213-880-9910. You and your referrals mean more than ever to my team and me. As we progress through this red-hot summer, please know we are incredibly thankful for you and a particular part of our business. 

Your friends, neighbors, work associates, and family members who may be considering a move can now do so and celebrate true independence from the fear of getting stuck with two homes or none at all. And remember… Your referrals help the Children… As I share with you each month, we are on a mission to raise $25,000 for the Children’s Hospital Los Angeles Helping Hands Fund. We do this by donating a portion of our income. Children’s does excellent work in helping kids overcome cancer and other life-threatening diseases. In fact, Kids under their care are 300% more likely to enter into remission IF they can get into the recovery center. But CHLA depends on Sponsorships and Donations to keep rolling. So, YOUR REFERRALS REALLY DO HELP THE KIDS…

Who do you know considering buying or selling a home you could refer to my real estate sales team? Not only will they benefit from our award-winning service, but we donate a portion of our income on every home sale to Children’s Hospital Los Angeles Helping Hands Fund. In addition, I want to make it easy to refer your friends, neighbors, associates, or family members considering making a move, so here are your options:

1. You can go to www.ReferralsHelpKids.com and enter their contact info online or forward the link to who you know considering a move.

2. Of course, you can always call me directly at 213-880-9910.

You and your referrals mean more than ever to my team and me. So as we move forward in this new season, please know that my team and I are incredibly thankful for your being a particular part of our business.

With all my appreciation,

Corey Chambers, Broker

P.S. The story of this girl and her family may cause you to look at your loved ones differently. It did me. Check it out.

It’s easy to refer those you know considering buying or selling a home. Here are the Options Again:

You can go to www.ReferralsHelpKids.com and enter their contact info online or forward the link to someone you know considering a move.

Call me direct or pass my number on:

213-880 9910.

Why I Support Children’s Hospital of Los Angeles

I grew up right here in Los Angeles. Born nearby at St. Francis Hospital. I remember hearing about a young person close to our family suffering from a serious illness and getting treated for that at Children’s Hospital Los Angeles. Then, I began to pay more immediate attention to their work at that hospital. Since then, I have learned that it is a collection of hard-working health care professionals, most making their homes right here in the Los Angeles area, all coming together for a common cause. That cause is to help young people overcome unfortunate health issues that life sometimes throws our way. Being a Los Angeles area, California native, I take pride in supporting in any way that I can the good work these people do at Children’s. My team rallies around our annual goal of raising money and donating portions of our income to help Children’s Hospital in its quest to heal young people when they need healing. My team and I are committed to providing outstanding results for buyers and sellers referred to us by our past clients. I have discovered that Children’s Hospital Los Angeles shares similar commitments to its patients. And since their services survive sponsorships and donations, we are happy to contribute and proud to support them.

Nano’s Next Chapter

Four years after bone marrow transplant, multidisciplinary care helps a Fanconi anemia patient focus on ‘kid stuff.’ — by Caitlin Kryl

Meeting new classmates at school.   
A pickup game of soccer.   
Quality time with a furry friend.   
And, hopefully, tracking down Iron Man at Disney World.

For much of 10-year-old Adriano’s (“Nano’s”) life, these types of activities were out of the question.

Born with a rare genetic condition called Fanconi anemia which affects bone marrow’s ability to create healthy blood cells, Nano spent his early childhood enduring countless hospital visits, tests and procedures, including a highly specialized bone marrow transplant and a year-long inpatient stay.

Finally, in November 2020, Nano and his mom, Eliana, rang the bell in the Patricia and John Merrill Bone Marrow Transplant Unit, signaling his discharge home and kickstarting a new phase of Nano’s health journey.

VIDEO: Nano and Eliana celebrate Nano’s discharge from inpatient care, November 2020. [WATCH HERE]- Opens in a new window

That journey hasn’t been picture-perfect; For the past four years, Nano’s fragile immune system necessitated dozens of outpatient visits and required him to sit out many activities like playing sports, traveling and going to school.

But this year, Nano enters the next chapter of his childhood: His immune system is healthy, he’s playing soccer and baseball with his brothers, and he has the green light from his doctors to attend in-person school for the first time. Most recently, he experienced his first rides on an airplane and a roller coaster in the same week.

“It has been a long journey,” says Eliana, who left her job in 2019 to care for Nano full-time and lived with him in the hospital. “Now when he gets a vaccine or blood draw, I tell him, ‘This is nothing!’ He’s overcome so much worse.”

A medical odyssey

At 4 years old, Nano spent more than a year in the Bone Marrow Transplant (BMT) Unit of CHLA’s Cancer and Blood Disease Institute.

“You went in being 4, you came out being 6 ½!” Eliana tells Nano.

Nano received a highly specialized, “mismatched” bone marrow transplant called an umbilical cord blood transplant. The gold standard for bone marrow transplantation involves a “fully matched” sibling donor—someone who matches the recipient at 10-out-of-10 human leukocyte antigens (HLA) which are the markers doctors use to match recipients and donors. Finding a 10-out-of-10 match is easier said than done, though.

Because HLAs are inherited, even when a transplant candidate has siblings, each sibling has only a 25% chance of being a full match. Additionally, many transplant candidates cannot find a fully matched donor in the National Marrow Donor Registry. For people with non-Caucasian heritage, the search is even more difficult: People of Hispanic or Latino, Asian or Pacific Islander and Black or African American descent will have only a 29-48% chance of finding a fully matched registry donor.

“In L.A., our patients come from so many different ethnic backgrounds, adding to the beauty of this city,” explains Paibel Aguayo-Hiraldo, MD, Medical Director of Transplantation and Cellular Therapy at CHLA and part of Nano’s long-term care team, “But most of them will not have a matched sibling donor or donor in the registry.”

Cord blood transplants, however, allow more flexibility. These “mismatched” transplants use the stem cells in donated umbilical cord blood and require fewer matching HLA proteins—usually four or five out of six. This was the best option for Nano, and an increasing number of the world’s population.

To Dr. Paibel Aguayo-Hiraldo (known as “Dr. Paibel” to her patients and almost everyone else at CHLA), CHLA’s location in one of the most ethnically diverse cities in the world requires building a fully trained team able to provide a wide array of advanced treatments like cord blood transplants.

“At CHLA, we have learned how to do every type of transplant using every source of stem cells and mismatch for patients who cannot find a donor,” she says. “We have conducted more than 2,000 transplants and cellular therapies since we were first established. We consistently perform more than 50% of all pediatric bone marrow transplants in Southern California.”

The transplant was a success—but Nano experienced several other complications that kept him in inpatient care, including a painful gastrological and skin condition known as Graft versus host disease.

Amidst these incredible challenges, Nano’s positivity made a lasting impression on his care team. “He was always smiling,” Dr. Paibel shares. “He could be super sick and he’d still say, ‘Dr. Paibel, give me a hug!’ Every day was new for him, no matter how ill he could have been the day before.”

The healing power of music

In the BMT Unit, Nano is well known for his love of performing—especially mariachi music.

During his long inpatient stay, he’d put on concerts for his care team and fellow patients. Donning a tiny, custom-made mariachi suit, Nano delivered passionate renditions of hits from the Disney movie “Coco” and Mexican folk classics like “Cielito Lindo.”

For the Ortiz family, “Cielito Lindo” (lyrics in the chorus translating to “sing, and don’t cry”) has served as a consistent source of comfort in good times and in hard times. Eliana sang it to Nano and his siblings to comfort them as babies. Then, Nano sang it endlessly during his hospital stay and even wrote the lyrics onto a pair of cleats- Opens in a new window for Major League Baseball star Justin Turner.

Years later, the song still holds the same joyful power: “He was singing it the whole drive to his appointment today,” says Eliana. “It’s like his anthem!”

Call the paparazzi!

To Nano and Eliana, that momentous day, ringing the bell at CHLA in 2020, is a memory that’s been hard to top.

For one, a full mariachi band joined the crowd for Nano’s sendoff.

Nano recalls how special it was to see so many people he loved cheering him on. First, his nurses, doctors and family members threw him a huge party on the BMT floor. Then, outside in the CHLA courtyard, an even bigger crowd was waiting for him: His very own “paparazzi” (the CHLA media team), the mariachi band, and even Iron Man, who symbolized strength and inspiration throughout Nano’s recovery.

“That is my best memory,” says Nano. “Everybody was there to support me.”

For Eliana, their departure signaled their ability to spend time as a family unit again. “It’s something we’ll never forget,” Eliana shares. “After so many years, we all got to be together.”

A long recovery

After a bone marrow transplant recipient is discharged from the hospital, recovery is incredibly sensitive, Dr. Paibel explains. She often tells her patients their lives will change for at least a year. For Nano, complications stretched recovery out even longer.

“Once you’re out of the hospital, in terms of vulnerability, it’s like having a newborn baby,” says Dr. Paibel. “Your body forgets all the vaccinations you received previously. Your brand-new immune system does not know how to fight infections. It’s easy to get very sick.”

Nano’s “newborn” immune system required that he avoid activities and encounters that might lead to illness, like in-person school. For a few years, that also meant skipping interactions with some of CHLA’s most beloved team members: therapy dogs.

“Bone Marrow Transplant is one of the only units in the hospital where they don’t get visits from therapy dogs,” Dr. Paibel explains.

Today, Nano makes up for that “dog-less” time by stopping to pet as many furry friends as possible.

Multidisciplinary care sets Nano up for success

This past June, Nano reached another milestone: His immune system became stable enough that Dr. Paibel and team declared him a “graduate” of the outpatient Bone Marrow Transplant Unit.

On hearing the news, nurses and clinicians from throughout Nano’s journey stopped by to celebrate. “Everybody was so happy,” shares Dr. Paibel, “We called each other to say, ‘Nano is graduating today!’”

While this milestone was overwhelmingly positive for Nano and Eliana, it also felt bittersweet: “It hit him once we left clinic,” says Eliana. “He’s like: ‘Wait, I’m done?’”

“He got so attached to the nurses, nurse practitioners and doctors, and he just couldn’t believe that he’s not going to see them anymore,” Eliana explains. “I’m like: ‘You’ll still come here! You can visit the other side of the clinic. You just don’t need to see them as your doctors.’”

Today, Nano’s outpatient visit days to CHLA are still quite full: He must meet with Dermatology, Nephrology, Pulmonology and Gastroenterology. Long-term multispecialty care for Nano’s Fanconi anemia is essential, as it affects many organs.

“This level of specialty expertise is critical, but so is our focus on human nature,” shares Dr. Paibel. “Each patient becomes family. When Nano visits, he’ll first tell me what he’s doing with his baby sister … and then we’ll talk about medicine.”

To his CHLA care team, Nano shares this message: “Thank you for taking care of me and being kind to me and helping me. You’re awesome.”

New priorities

For so many years, Nano’s number one priority had to be recovery. Four years after his discharge from the hospital, he has a new directive from his care team: Just be a kid.

When asked what aspect of in-person school he’s most excited about, Nano expresses how much he looks forward to making new friends. He plans to tell them about the long journey he’s been on to get there and share his love of sports, superheroes and song.

Before Nano heads to school this fall, his family embarked on yet another milestone: their first trip since Nano was born.

Eliana, her husband Marco and five brothers and sisters all headed to Disney World via Make-A-Wish. Along with trying to “ride every single ride,” Nano most enjoyed meeting up with his favorite superheroes, including Buzz Lightyear, Iron Man and Captain America. “They’re strong and I’m strong,” he says.

“I feel like after this storm, after so much that has happened, we finally get to have some peace together and just have fun as a family,” shares Eliana. — Story and photos courtesy Children’s Hospital Los Angeles

Read the original story about Nano from November 2020 here.

Refer your friends, neighbors, associates, or family members who are considering making a move:

www.ReferralsHelpKids.com or call Corey at 213-880-9910

Copyright © This free information provided courtesy L.A. Loft Blog with information provided by Corey Chambers, Broker DRE 01889449. We are not associated with the seller, homeowner’s association or developer. For more information, contact 213-880-9910 or visit LALoftBlog.com Licensed in California. All information provided is deemed reliable but is not guaranteed and should be independently verified. Text and photos created or modified by artificial intelligence. Properties subject to prior sale or rental. This is not a solicitation if buyer or seller is already under contract with another broker.

Corey Chambers Real Estate Newsletter July 2024 | The California Home

The California Home
The California Home

Celebrate ‘Your’ Independence… TOO!

July 4th 1776 is a momentous day in history for all FREE

Owning real estate, especially your own home, is a sure-fire celebration of independence. In today’s market, many homeowners really want to make a move but are finding themselves in a catch-22 – whether to sell first or buy first. They don’t want to end up getting stuck owning two homes or none at all. I am sure you will join me in saying we can’t blame them. I also believe that you agree that this is true for ourselves and others; homeownership is good for ALL. The more who can buy a home, the more who can sell a home, the more our economy benefits. And as Jimmy Carter said, “To be true to ourselves, we must be true to others.

Fortunately, I have a special program for Home Owners wanting to move and Buyers wanting to buy in Today’s market that turns the tables on this CATCH 22.

Over the last 12+ years of selling real estate, I have been able to develop and successfully implement a program that allows me to guarantee the sale of a property. Yep, you read that right. Actually guarantee in writing the sale of a home. Obviously, a program like this gives sellers GREAT PEACE OF MIND (a true celebration of independence from fear). I guarantee, upfront and in writing, that if their home does not sell at their price and within their time frame – I will step in and buy it myself.

The conditions are simple: the seller and I must agree on the price and possession date. Buyers benefit too because we are able to ensure they get the home they want and back up their purchase with a satisfaction guarantee: if they are not happy with the home, we will buy it back. This obviously is a win-win for all involved.

This is where you come in…

Your friends, neighbors, work associates, and family members who may be considering a move can now do so and celebrate true independence from the fear of getting stuck with two homes or none at all. And remember… Your referrals help the Children… As I share with you each month, we are on a mission to raise $25,000 for the Children’s Hospital Los Angeles Helping Hands Fund. We do this by donating a portion of our income. Children’s does great work in helping kids overcome cancer and other life-threatening diseases. In fact, Kids under their care are 300% more likely to enter into remission IF they can get into the recovery center. BUT the Recovery Center depends on sponsorships and donations to keep rolling. So, YOUR REFERRALS REALLY DO HELP THE KIDS…

Who do you know considering buying or selling a home you could refer to my real estate sales team? Not only will they benefit from our award-winning service, but we donate a portion of our income on every home sale to Children’s Hospital Los Angeles Helping Hands Fund. I want to make it easy to refer your friends, neighbors, associates, or family members considering making a move, so here are your options:

1. You can go to www.ReferralsHelpKids.com and enter their contact info on line or forward the link to who you know considering a move.

2. Of course you can always call me direct as well at 888-240-2500.

You and your referrals mean more than ever to my team and me. As we move forward in this new season, please know my team and I are extremely thankful for you and you’re being a special part of our business.

With all my appreciation.

P.S. The story of this young person enclosed may cause you to look at your loved ones differently. It did me. Check it out.

It’s easy to refer those you know considering buying or selling a home. Here are the Options Again:

You can go to www.ReferralsHelpKids.com and enter their contact info on line or forward the link to someone you know considering a move.

Call me direct or pass my number on 213-880 9910.

Why I Support Children’s Hospital of Los Angeles

I grew up right here in Los Angeles. Born right nearby at St. Francis Hospital. I remember when I first heard about a young person close to our family suffering from a serious disease and getting treated for that at Children’s Hospital Los Angeles. It was then that I began to pay closer attention to the work they do at that hospital. Since then, I have learned that it is a collection of hard-working health care professionals, most making their home right here in the Los Angeles area, all coming together for a common cause. That cause is to help young people overcome unfortunate health issues that life sometimes throws our way. Being a Los Angeles area, California native, I take pride in supporting in any way that I can the good work these people do at Children’s. My team rallies around our annual goal of raising money and donating portions of our income to help Children’s Hospital in its quest to heal young people when they need healing. My team and I are committed to providing outstanding results for buyers and sellers referred to us by our past clients. I have discovered that Children’s Hospital Los Angeles shares similar commitments to their patients. And since their services survive on sponsorships and donations we are happy to contribute and proud to support them.

New Treatment for Down Syndrome Regression Disorder Helps Bring Darci Back to Herself

by Parker Danowski

The Special Olympian and her mother find answers and rapid improvement at CHLA.

Track and field star, bowler, floor hockey player, health coach, cooking show host, public speaker—all these words describe Darci.

Growing up with Down syndrome, a genetic condition that results in intellectual disabilities and developmental delays, never kept Darci from staying busy. She excelled in leadership roles and in team settings in her home state of Alaska and participated in mainstream school life.

“In high school, she was in the marching band,” Dana says. “She was varsity high school basketball manager, and she traveled with the team independently, without me. She went to an after-school program where they learn job skills up until she was 21. After that, she got a job with Special Olympics.”

Working for the largest sports organization in the world for individuals with intellectual disabilities, Darci filled an important role.

“Initiatives Assistant,” Darci says proudly. This position involved assisting with clubs at Special Olympics Unified Schools. Beyond her job, Darci was deeply involved with the organization as an athlete, playing multiple sports, and as a public speaker at Special Olympics games and PR events. As Dana says, “You gave this girl a microphone and she could light up a crowd.”

Darci was also the first Special Olympics athlete to become a certified health coach for the organization in Alaska, teaching other athletes how to maintain a healthy lifestyle and hosting a YouTube cooking show. She would even travel with the Seattle Seahawks when the football team would visit Alaska.

Then, in early 2022, things started to change. First, Darci began to mysteriously lose weight. Next came confusion. “Darci would unload the dishwasher and take a spatula and try to put it in the fridge,” Dana says. “She would stand there and she was able to verbalize, ‘I’m confused.’” It quickly got worse.

Darci was also the first Special Olympics athlete to become a certified health coach for the organization in Alaska, teaching other athletes how to maintain a healthy lifestyle and hosting a YouTube cooking show. She would even travel with the Seattle Seahawks when the football team would visit Alaska.

Then, in early 2022, things started to change. First, Darci began to mysteriously lose weight. Next came confusion. “Darci would unload the dishwasher and take a spatula and try to put it in the fridge,” Dana says. “She would stand there and she was able to verbalize, ‘I’m confused.’” It quickly got worse.

“The week of April 11 is when it hit with a vengeance,” Dana explains. Darci stopped eating and began hallucinating. “There was one time it was so bad that I had to stop the car on the highway because I thought she was going to jump out.”

The weight loss ramped up. Darci lost 30% of her body weight and was down to 89 pounds. She lost her ability to bathe or dress herself. An accomplished 28-year-old, Darci was estimated to be functioning at an 18-month-old level. “It was getting pretty scary,” says Dana.

She brought Darci to various medical providers in Alaska, but they could not diagnose her. “I had always heard that this population [those with Down syndrome] was underserved medically, and I had never experienced that personally,” Dana says. She has worked in health care for 31 years and is Manager of Therapy Services at Alaska Regional Hospital. But she was shocked at how difficult it was to get a straight answer from the providers she and Darci were seeing.

One gastrointestinal specialist told Dana that he couldn’t help Darci if she chose not to eat, and Dana had to reiterate that Darci wasn’t choosing not to eat. When they saw a neurologist, Dana was told almost immediately that Darci must have schizophrenia.

“I was like, ‘Based on what diagnosis are you saying that?’” Dana recalls. “This doctor said that her speech was fluent. Darci was mute at that point.”

Dana was able to bring Darci to a psychiatrist who prescribed an antipsychotic medication, which eliminated Darci’s hallucinations. But her other symptoms continued as Dana persisted in her search for answers.

“We did have one primary care provider [PCP] who had known Darci since we transitioned from pediatric care at 18,” she explains. The doctor was also having trouble diagnosing Darci, but Dana says she offered something the other providers didn’t: hope. “She was the one person who was like, ‘I don’t know what it is, but we’re going to find it.’”

And eventually, they did. Dana researched Darci’s symptoms on her own. “I was just plugging in anything that I could find that would match Darci’s symptoms. What kept popping up were Dr. Santoro’s articles. I was like, ‘Oh my gosh, this is what Darci has. I’ve got to pursue this path.’”

The articles Dana had discovered were the work of Jonathan D. Santoro, MD, Director of the Neuroimmunology Program at Children’s Hospital Los Angeles. Since 2019, Dr. Santoro had been working to develop a novel treatment protocol for DSRD. He recognized that DSRD was often misdiagnosed as schizophrenia, early-onset Alzheimer’s disease or late-onset autism. He saw that physicians tended to be so focused on a patient’s Down syndrome that they wouldn’t fully investigate their individual symptoms.

“I just kept asking the question: Why are we treating these patients differently?” Dr. Santoro says. He became determined to better understand DSRD and identify new ways to treat it.

He tested patients with DSRD for conditions that could be affecting the brain and found inflammatory markers in the patients’ cerebrospinal fluid. Evidence began to grow that DSRD could be treated as an inflammatory condition.

This data led Dr. Santoro and CHLA to launch the first clinical trial for DSRD. A National Institutes of Health-funded collaboration with the University of Colorado and Children’s Hospital Colorado, the trial is investigating the safety and effectiveness of three potential treatments: lorazepam, a medicine that treats catatonia; an immune therapy called intravenous immunoglobin (IVIg); and Tofacitinib, a drug that suppresses an individual’s immune system.

By the time Dana reached out to Dr. Santoro, he was deeply familiar with DSRD. “He and our PCP connected and he gave her the diagnostics that we needed to run,” Dana says. Dana and Darci finally received a DSRD diagnosis seven months after the onset of Darci’s symptoms. “Then we went straight to Dr. Santoro  in California to initiate our treatments.”

Dr. Santoro recalls meeting Dana and Darci in person for the first time at CHLA. “The thing that I was most struck by was what Darci used to do,” he says. “I mean, she’s not just a typical young woman—she’s leading Special Olympics, she’s the upstanding citizen in her community, she just does so much. So to meet her and see this shell of a person—it was a very emotional visit between Dana and Darci and myself.”

Dr. Santoro initially prescribed lorazepam to address Darci’s catatonia. The first signs of improvement emerged during the pandemic. “We were still using masks,” Dana recalls, tearing up. “The first thing Darci did independently was she went and put all the masks by the door in a basket. That seems like a silly task—putting masks in a basket. But when you’ve gone seven months with just nothing—sitting on the couch and just being catatonic and not able to do anything—that simple task was just huge.”

The progress continued. Darci regained the ability to dress herself and eat on her own. Then, after Dana worked hard to obtain coverage from her insurance provider, Darci began IVIg infusions. “She’s been on that for about 16 months,” Dana says. “And we continue to see improvements.” The changes aren’t as drastic as they were when Darci started treatment, but every step forward is major.

Dr. Santoro also emphasizes that Darci’s providers in Alaska were open to discussing Darci’s progress, as well as his research. This helped immensely in monitoring Darci’s treatment between her visits to CHLA.

“We shared the literature and we talked about what to monitor for, and the doctors over there were really fantastic,” he says.

Through this experience, Darci has been attending a Family Outreach Center for Understanding Special Needs (FOCUS) in Alaska to re-engage in activities like community service. She has been involved with FOCUS since childhood, and they have played an important role in her DSRD journey. The FOCUS team brought Darci back to the space where she used to host her cooking show, and she has started to cook again.

Dana happily describes Darci’s present state. “Treatment’s going great,” she says. “Of all of the symptom clusters that are DSRD, most of them are gone.” The areas that they are still working on with Dr. Santoro are Darci’s speech and her internal motivation to independently perform tasks.

Dr. Santoro understands that while Darci is on a positive path, many others with DSRD need help.

“We get hundreds of emails a month from people all over the world,” he says. To support these individuals, Dr. Santoro remains committed to translating his research into new treatments as quickly as possible. “Being fast has really allowed us to totally change the landscape, and I think that will continue in the next couple of years as we get more and more data.”

As Dana and Darci look ahead, Special Olympics has assured them that there will be a position for Darci when she is ready to return. At the mention of this, Darci smiles wide and gives a thumbs up. Dana looks forward to Darci being able to organize the FOCUS  Halloween party and to dance at Special Olympics dances again.

Dana also recognizes how much she and Darci have had to grow through this experience. “I think it has brought out a spirit of advocacy,” she explains. “I’m advocating for lifesaving care for her—and I’m telling this story so that any other physician, health care provider or parent can just know what this is so they don’t have to search for answers like so many of us have.”

Meanwhile, Darci is steadily resuming the activities she used to enjoy. She cooks again—making breakfast with her mom and preparing some favorite dishes (like runny eggs and hash browns, she says). She asks to listen to songs that she hasn’t heard in a long time.

“She recognizes that she’s not doing something, and she says, ‘I want to do it,’” Dana explains. “That’s Darci’s goal.”

Learn more about CHLA’s Down Syndrome Neurology Program.

Refer your friends, neighbors, associates, or family members who are considering making a move:

www.ReferralsHelpKids.com 
or call Corey at 213-880-9910

Copyright © This free information is provided courtesy of L.A. Loft Blog and Entar.com with the information provided by Corey Chambers, Broker, DRE#01889449 We are not associated with the homeowner’s association or developer. For more information, contact (213) 880-9910 or visit CoreyChambers.com Licensed in California. All information provided is deemed reliable but is not guaranteed and should be independently verified. Properties are subject to prior sale or rental. This is not a solicitation if the buyer or seller is already under contract with another broker.