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Local high-risk residents hunker down during shelter-in-place order

Founders of Nephrotic Syndrome Foundation balance risk when leaving home

The ongoing shelter-in-place order installed throughout the country has put a certain amount of strain on most families who, in addition to anxieties brought about by the spread of the novel coronavirus, try to cope with isolation and a shortage of home necessities.

While many residents feel those stresses, in many cases those feelings have been heightened for residents with family members who have pre-existing auto-immune issues.

"For us the way that we live everyday is probably so similar to what people are dealing with now with everything going on," said Andi Callaway, whose 13-year-old son Wilson has a rare auto-immune disease called nephrotic syndrome.

Nephrotic syndrome affects the kidneys and stops them from working properly according to Callaway. Kidneys are a vital part of keeping a person's system functioning in harmony, filtering out toxins in the bloodstream while carrying important proteins and vitamins throughout the body.

Nephrotic Syndrome causes a person's body to pass too much protein into their urine as the kidneys shut down.

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Treatments for the disease are very limited and consist primarily of steroids, cancer and transplant medications —treatments that Callaway says can be quite overwhelming, especially for children, and can leave an already weakened immune system even more vulnerable.

Callaway explained that even something as common as a sunburn, mosquito bite or cold can cause a patient to relapse and send them to the hospital.

"Side effects of medications can be overwhelming and a lot of kids can spend most of their lives in and out of the hospital trying to balance between living a normal life and then managing the side effects of these treatments that are supposed to keep them in remission," she said. "A lot of it deals with a lot of what we are dealing with now, which is trying to avoid getting sick."

The U.S. Center for Disease Control and Prevention has said that residents who have certain pre-existing conditions or are immunocompromised -- including cancer treatment patients -- might be at higher risk for severe illness from COVID-19 and should strongly follow social distancing guidelines.

"As I look out on the (future) now we're homebound like everybody else, which I appreciate, but at some point the government is going to lift those restrictions. If everyone has done their part we will have flattened the curb, and (I'm) sort of contemplating what does that look like for us?” Call away said. “To return to normal society is a little overwhelming because we can barely operate under normal circumstances, but with something that's got such a high level of risk, that's hard to swallow.”

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Like most East Bay families, the Callaways -- which also includes Andi’s husband Tucker and their 11-year-old daughter Lila -- have been spending their isolation with a lot of together time, dog walks and ensuring that the kids stay on top of their online studies.

"We've actually been really grateful for this era of video games like Fortnight," she laughed. "This thing that was such a bane of our existence and now, what would be so frustrating a lot of the time, has been a gift because (Wilson) can connect with his friends that way, so it feels really normal."

While many stores have had limited access to certain essential items such as toilet paper and hand sanitizer, Callaway saw the need for her family to quarantine well in advance of the county's shelter-in-place order and was able to stock up on plenty of supplies.

One particular area of concern for the family is how to acquire fresh food and produce as the order drags on, knowing that to venture out in public comes with the risk of bringing back an illness.

"We have a lot of frozen vegetables and frozen food but (maintaining) health is a really important element of Nephrotic Syndrome, with any auto-immune disease we try to eat healthy and clean, so not having fresh produce is kind of a concern," she said. "(We're) trying to balance what the risk is for buying it at a grocery store where it might have been contaminated versus eating just frozen vegetables."

While the ongoing COVID-19 crisis has placed an added amount of stress on the family, the Callaways have created a support system for themselves and families with members who have the Nephrotic Syndrome through their founding of the Nephrotic Syndrome Foundation.

Created in response to their son's diagnosis at the age of 6, the Nephrotic Syndrome Foundation was founded in order to offer personal support to families with members suffering from this rare disease, letting families and patients know that they are not alone, and connecting them with supplies and information needed in order to fight the disease.

"That is something that came out of our need as a family, because we really couldn't find anyone else who was in our situation when he was first diagnosed," Callaway said.

Not only does the foundation work to connect families together, but every year through its Backpacks for Hope program, the organization sends backpacks full of helpful gear such as home urine testing kits, wireless over-ear headphones, journals, gifts, information on upcoming events and more.

The Nephrotic Syndrome Foundation also provides financial and emotional support to patients through various events and programs, some of which help provide families with hospital-grade thermometers or connecting families with health care officials.

The status of events and donation opportunities are a bit up in the air right now according to Callaway, who said that its largest annual event, the Gameday tailgate during the Oakland A's game against the San Francisco Giants, is so far still on but in a bit of a limbo.

Scheduled for June 7, the Gameday tailgate features food and games, and culminates with the group watching the Bay Area's two baseball teams duel at the Oakland Coliseum.

"We've sold about 100 tickets, we've brought in a good number of sponsorships and are still offering tickets, but June 7 is right on the cusp and we don't know what (baseball teams) are going to be doing," she said.

The organization is still working to support its various programs and send packages to newly diagnosed patients, however, and residents can learn more or submit a donation online at https://www.nephroticsyndromefoundation.org/ www.nephroticsyndromefoundation.org.

"This is an underserved group. There is no other organization out there who provides support to these families," Callaway said. "You can literally help change the world for these families."

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Local high-risk residents hunker down during shelter-in-place order

Founders of Nephrotic Syndrome Foundation balance risk when leaving home

by /

Uploaded: Thu, Apr 2, 2020, 3:07 pm

The ongoing shelter-in-place order installed throughout the country has put a certain amount of strain on most families who, in addition to anxieties brought about by the spread of the novel coronavirus, try to cope with isolation and a shortage of home necessities.

While many residents feel those stresses, in many cases those feelings have been heightened for residents with family members who have pre-existing auto-immune issues.

"For us the way that we live everyday is probably so similar to what people are dealing with now with everything going on," said Andi Callaway, whose 13-year-old son Wilson has a rare auto-immune disease called nephrotic syndrome.

Nephrotic syndrome affects the kidneys and stops them from working properly according to Callaway. Kidneys are a vital part of keeping a person's system functioning in harmony, filtering out toxins in the bloodstream while carrying important proteins and vitamins throughout the body.

Nephrotic Syndrome causes a person's body to pass too much protein into their urine as the kidneys shut down.

Treatments for the disease are very limited and consist primarily of steroids, cancer and transplant medications —treatments that Callaway says can be quite overwhelming, especially for children, and can leave an already weakened immune system even more vulnerable.

Callaway explained that even something as common as a sunburn, mosquito bite or cold can cause a patient to relapse and send them to the hospital.

"Side effects of medications can be overwhelming and a lot of kids can spend most of their lives in and out of the hospital trying to balance between living a normal life and then managing the side effects of these treatments that are supposed to keep them in remission," she said. "A lot of it deals with a lot of what we are dealing with now, which is trying to avoid getting sick."

The U.S. Center for Disease Control and Prevention has said that residents who have certain pre-existing conditions or are immunocompromised -- including cancer treatment patients -- might be at higher risk for severe illness from COVID-19 and should strongly follow social distancing guidelines.

"As I look out on the (future) now we're homebound like everybody else, which I appreciate, but at some point the government is going to lift those restrictions. If everyone has done their part we will have flattened the curb, and (I'm) sort of contemplating what does that look like for us?” Call away said. “To return to normal society is a little overwhelming because we can barely operate under normal circumstances, but with something that's got such a high level of risk, that's hard to swallow.”

Like most East Bay families, the Callaways -- which also includes Andi’s husband Tucker and their 11-year-old daughter Lila -- have been spending their isolation with a lot of together time, dog walks and ensuring that the kids stay on top of their online studies.

"We've actually been really grateful for this era of video games like Fortnight," she laughed. "This thing that was such a bane of our existence and now, what would be so frustrating a lot of the time, has been a gift because (Wilson) can connect with his friends that way, so it feels really normal."

While many stores have had limited access to certain essential items such as toilet paper and hand sanitizer, Callaway saw the need for her family to quarantine well in advance of the county's shelter-in-place order and was able to stock up on plenty of supplies.

One particular area of concern for the family is how to acquire fresh food and produce as the order drags on, knowing that to venture out in public comes with the risk of bringing back an illness.

"We have a lot of frozen vegetables and frozen food but (maintaining) health is a really important element of Nephrotic Syndrome, with any auto-immune disease we try to eat healthy and clean, so not having fresh produce is kind of a concern," she said. "(We're) trying to balance what the risk is for buying it at a grocery store where it might have been contaminated versus eating just frozen vegetables."

While the ongoing COVID-19 crisis has placed an added amount of stress on the family, the Callaways have created a support system for themselves and families with members who have the Nephrotic Syndrome through their founding of the Nephrotic Syndrome Foundation.

Created in response to their son's diagnosis at the age of 6, the Nephrotic Syndrome Foundation was founded in order to offer personal support to families with members suffering from this rare disease, letting families and patients know that they are not alone, and connecting them with supplies and information needed in order to fight the disease.

"That is something that came out of our need as a family, because we really couldn't find anyone else who was in our situation when he was first diagnosed," Callaway said.

Not only does the foundation work to connect families together, but every year through its Backpacks for Hope program, the organization sends backpacks full of helpful gear such as home urine testing kits, wireless over-ear headphones, journals, gifts, information on upcoming events and more.

The Nephrotic Syndrome Foundation also provides financial and emotional support to patients through various events and programs, some of which help provide families with hospital-grade thermometers or connecting families with health care officials.

The status of events and donation opportunities are a bit up in the air right now according to Callaway, who said that its largest annual event, the Gameday tailgate during the Oakland A's game against the San Francisco Giants, is so far still on but in a bit of a limbo.

Scheduled for June 7, the Gameday tailgate features food and games, and culminates with the group watching the Bay Area's two baseball teams duel at the Oakland Coliseum.

"We've sold about 100 tickets, we've brought in a good number of sponsorships and are still offering tickets, but June 7 is right on the cusp and we don't know what (baseball teams) are going to be doing," she said.

The organization is still working to support its various programs and send packages to newly diagnosed patients, however, and residents can learn more or submit a donation online at https://www.nephroticsyndromefoundation.org/ www.nephroticsyndromefoundation.org.

"This is an underserved group. There is no other organization out there who provides support to these families," Callaway said. "You can literally help change the world for these families."

Comments

Neighbor 1
Carlton Oaks
on Apr 3, 2020 at 12:21 pm
Neighbor 1, Carlton Oaks
on Apr 3, 2020 at 12:21 pm
6 people like this

I resonate with this story to a T! I too am high risk and stuck at home, with no way to get fresh foods (or any other supplies for that matter). Even the home grocery delivery services are booked out weeks in advance.
If anyone knows of a way to get groceries delivered, please comment. Can’t afford to DoorDash or order out, and I’ve got a hungry teenage boy at home. He’s eating everything! Lol
Don’t worry though, he eats before I do. :)


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