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CoachArt

These two stories were created as part of Project Los Angeles, a photography workshop created by Momenta Workshops in conjunction with Leica and coaches—Jamie Rose, Craig Semetko, Matt Rose, and Dotan Saguy. 

CoachArt is a 501(c)(3) non-profit organization based in Los Angeles and San Francisco that creates various arts and athletic programming for hundreds of children who live with chronic illness. Children living with chronic illness may feel isolated because of their condition. Frequent hospital visits and deficient immune systems often cause them to miss time in school and recreational activities. Families, overwhelmed by the cost and demands of ongoing medical care, often lack the resources to seek out or afford extracurricular activities. Healthy siblings are affected too when family resources are focused on a chronically ill child. CoachArt supports these families by offering free recreational lessons that bring a sense of normalcy back into their lives. 

These two stories were created in two days as part of Project Los Angeles, a photography workshop created by Momenta Workshops in conjunction with Leica and coaches—Jamie Rose, Craig Semetko, Matt Rose, and Dotan Saguy. 



Brett's Battle

“Probably the only thing that defined me the most was when I went bald. I didn’t like that very much, but I have hair now," says Brett Bailey who wakes up at 5:00am to play guitar, make food, and do homework before going to eighth grade. Brett was diagnosed at five-years-old and began treatments immediately to fight sarcoma, an uncommon group of cancers that begins in the bones and forms into a tumor. Now at 14-years-old, he is a cancer survivor and active participant in the CoachArt, a nonprofit that creates transformative arts and athletics community for families impacted by childhood chronic illness.

“Probably the only thing that defined me the most was when I went bald. I didn’t like that very much, but I have hair now," says Brett Bailey who wakes up at 5:00am to play guitar, make food, and do homework before going to eighth grade. Brett was diagnosed at five-years-old and began treatments immediately to fight sarcoma, an uncommon group of cancers that begins in the bones and forms into a tumor. Now at 14-years-old, he is a cancer survivor and active participant in the CoachArt, a nonprofit that creates transformative arts and athletics community for families impacted by childhood chronic illness.

 
"He was five when he was diagnosed. Brett had a tumor in his face," says Brett's mom, Adele. "He was taking a bath with his cousin. They were spitting water at each other. It looked like he had gum in his mouth. I told him to spit it out and he said 'No this is part of my mouth.' The doctor sent us to a surgeon. I thought it would be an abscess and it was cancer. That's when we were off and running."

"He was five when he was diagnosed. Brett had a tumor in his face," says Brett's mom, Adele. "He was taking a bath with his cousin. They were spitting water at each other. It looked like he had gum in his mouth. I told him to spit it out and he said 'No this is part of my mouth.' The doctor sent us to a surgeon. I thought it would be an abscess and it was cancer. That's when we were off and running."

 
"Jenna, she passed away in the hospital. Aplastic anemia, which is a near fatal disease and she passed at 6. That had a huge impact on his life," says Adele. "They had the same medical team... He could visit her in the hospital in a way that other kids couldnt. That's when he realized that it could happen to him. And me too."

"Jenna, she passed away in the hospital. Aplastic anemia, which is a near fatal disease and she passed at 6. That had a huge impact on his life," says Adele. "They had the same medical team... He could visit her in the hospital in a way that other kids couldnt. That's when he realized that it could happen to him. And me too."

 
"He is a million dollar baby. His medical bills all together have gone beyond 1.3 million and his cap is 2 million," Adele says. "When you have someone who's at 70% of that number, I'm worried. We hit that number by the time he was ten. Out of pocket we spent $400,000 over five years. That was optional on our part because we got second and third opinions on everything. Pathology, blood tests, scans—everything. I believe that saved him." 

"He is a million dollar baby. His medical bills all together have gone beyond 1.3 million and his cap is 2 million," Adele says. "When you have someone who's at 70% of that number, I'm worried. We hit that number by the time he was ten. Out of pocket we spent $400,000 over five years. That was optional on our part because we got second and third opinions on everything. Pathology, blood tests, scans—everything. I believe that saved him." 

 
"It (chemotherapy) affects your motor skills," says Adele. "When he was in second grade he had a hard time holding pencils. Part of the reason I got him into piano because when he got sick he no longer could go outside and play and he had to play inside and also it helped his motor skills." Brett plans to become an environmental engineer after attending college. Brett already has his top colleges picked out—University of California Davis, Harvard, and Yale.

"It (chemotherapy) affects your motor skills," says Adele. "When he was in second grade he had a hard time holding pencils. Part of the reason I got him into piano because when he got sick he no longer could go outside and play and he had to play inside and also it helped his motor skills."

Brett plans to become an environmental engineer after attending college. Brett already has his top colleges picked out—University of California Davis, Harvard, and Yale.

 
Brett has been participating in CoachArt for seven years. Kevin began playing music with Brett for about three weeks and they're already very close friends. "My first guitar lesson with Brett...let's just say that my lesson plan went out the window, as his skill level was way too advanced for what I initially prepared for him, needless to say, I was throwing everything but the kitchen sink at him: advanced picking techniques, chord structures, music theory, ear training."

Brett has been participating in CoachArt for seven years. Kevin began playing music with Brett for about three weeks and they're already very close friends. "My first guitar lesson with Brett...let's just say that my lesson plan went out the window, as his skill level was way too advanced for what I initially prepared for him, needless to say, I was throwing everything but the kitchen sink at him: advanced picking techniques, chord structures, music theory, ear training."

 
Brett plays over four musical instruments in addition to sports teams at school. “I’ve been in band since the sixth grade," Brett says. "I play the flute now and the piccolo. I might be learning how to play the violin. It’s second on my list. Hopefully, I’ll make it to the their advanced band. It’s kind of my goal.”

Brett plays over four musical instruments in addition to sports teams at school.

“I’ve been in band since the sixth grade," Brett says. "I play the flute now and the piccolo. I might be learning how to play the violin. It’s second on my list. Hopefully, I’ll make it to the their advanced band. It’s kind of my goal.”

 
"A lot of prayer, a lot of effort, a lot of money and he's here. That to me is the winning combo," says Adele.

"A lot of prayer, a lot of effort, a lot of money and he's here. That to me is the winning combo," says Adele.

 
“What made me really proud of it," Brett says,"I was getting out of the fifth grade one of my friends who already knew I had come out of cancer—right before we were leaving school he kind of started bursting into tears and he hugged me and told me that that was kind of inspiring how I got over cancer…that’s probably what made me the most proud of it I guess you could say.”

“What made me really proud of it," Brett says,"I was getting out of the fifth grade one of my friends who already knew I had come out of cancer—right before we were leaving school he kind of started bursting into tears and he hugged me and told me that that was kind of inspiring how I got over cancer…that’s probably what made me the most proud of it I guess you could say.”

 

 

A Family of Heart

"She has hearing loss. She had a cleft palate. I couldn't feed her," Francisca 's mom, Maria, says. "She was sleeping all the time and she couldn't wake up by herself. I had to wake up every three hours. At night too. After four months I got really sick. I couldn't sleep. I was really sad." Francisca , 13, suffers from an undiagnosed chronic heart illness and is living with her family in California undocumented. When Francisca was a baby she came to the United States from Mexico with her family after doctors told her parents she had only three months to live. Today, she attends school and participates in programs provided by CoachArt, a nonprofit that creates free arts and athletics programs as well as community for families impacted by childhood chronic illness.

"She has hearing loss. She had a cleft palate. I couldn't feed her," Francisca 's mom, Maria, says. "She was sleeping all the time and she couldn't wake up by herself. I had to wake up every three hours. At night too. After four months I got really sick. I couldn't sleep. I was really sad."

Francisca , 13, suffers from an undiagnosed chronic heart illness and is living with her family in California undocumented. When Francisca was a baby she came to the United States from Mexico with her family after doctors told her parents she had only three months to live. Today, she attends school and participates in programs provided by CoachArt, a nonprofit that creates free arts and athletics programs as well as community for families impacted by childhood chronic illness.

 
"In the house I feel brave but not outdoors," Francisca says. "At school I don't feel comfortable because there are one thousand students. When it's lunch or after school they run and I get scared they will bump me and I will fall. I stay in the office to sit for a while after lunch." Facing surgeries and lots of medicines Francisca has gone to hospitals in both Mexico and the United States; doctors still don't know what her condition is.

"In the house I feel brave but not outdoors," Francisca says. "At school I don't feel comfortable because there are one thousand students. When it's lunch or after school they run and I get scared they will bump me and I will fall. I stay in the office to sit for a while after lunch."

Facing surgeries and lots of medicines Francisca has gone to hospitals in both Mexico and the United States; doctors still don't know what her condition is.

 
Francisca 's sister Selena, 6, shares a bed with their mom, Maria, while Francisca sleeps in the bed next to them in the living room of their one bedroom apartment where they live with their brother, father, and grandmother.

Francisca 's sister Selena, 6, shares a bed with their mom, Maria, while Francisca sleeps in the bed next to them in the living room of their one bedroom apartment where they live with their brother, father, and grandmother.

 
"She is getting stronger and stronger and might not need her oxygen anymore, but if she doesn't have the oxygen anymore she won't have her health care assistant...I'm afraid she could get hurt. She might not be as fast as them. I'm afraid," says Maria.

"She is getting stronger and stronger and might not need her oxygen anymore, but if she doesn't have the oxygen anymore she won't have her health care assistant...I'm afraid she could get hurt. She might not be as fast as them. I'm afraid," says Maria.

 
"I love my country [Mexico] and I want to go back, but if I have an opportunity to have my girl back in this amazing country than it doesn't matter," says Maria. "I know every parent would do the same thing."  Francisca 's parents, both college graduates, left their jobs to come to the United States to seek help for Francisca and opportunities for all of their children. Now Maria works at a laundromat and her husband works at a restaurant.

"I love my country [Mexico] and I want to go back, but if I have an opportunity to have my girl back in this amazing country than it doesn't matter," says Maria. "I know every parent would do the same thing." 

Francisca 's parents, both college graduates, left their jobs to come to the United States to seek help for Francisca and opportunities for all of their children. Now Maria works at a laundromat and her husband works at a restaurant.

 
"I feel afraid that we have to go out of the country because right here I see a lot of opportunities for my kids. Not for me but for my kids. This is a chance to give them an education because that's the only thing that matters...Whatever happens to them no one is going to take that away from them. Everyday I think about them and I think this is for you guys. Maybe I can't give them a lot more like I wish but I can give them education," says Maria.

"I feel afraid that we have to go out of the country because right here I see a lot of opportunities for my kids. Not for me but for my kids. This is a chance to give them an education because that's the only thing that matters...Whatever happens to them no one is going to take that away from them. Everyday I think about them and I think this is for you guys. Maybe I can't give them a lot more like I wish but I can give them education," says Maria.

 
Selena is taller than Francisca . "They play a lot and Selena has been exposed to a lot of medical appointments," their mom, Maria, says. "Right now Selena says she wants to be a doctor because she wants to help the kids. I'm teaching Selena to take care of her sister. Even though she's bigger than her she has to respect her and listen to her. She has to take care of her."

Selena is taller than Francisca . "They play a lot and Selena has been exposed to a lot of medical appointments," their mom, Maria, says. "Right now Selena says she wants to be a doctor because she wants to help the kids. I'm teaching Selena to take care of her sister. Even though she's bigger than her she has to respect her and listen to her. She has to take care of her."

 
"The cultural is more educational for kids and they [CoachArt] help them improve while they're learning new stuff," says Francisca . Francisca has been coming to CoachArt for about one year. Francisca, a natural teacher, brings her sister and they participate in the programs together.

"The cultural is more educational for kids and they [CoachArt] help them improve while they're learning new stuff," says Francisca .

Francisca has been coming to CoachArt for about one year. Francisca, a natural teacher, brings her sister and they participate in the programs together.

 
"I found CoachArt though Children's Hospital. I like to expose my kids to everything. If they have an opportunity to do something I just take them. I know that it's going to be an experience. Some day they'll say thank you mommy for everything," says Maria.

"I found CoachArt though Children's Hospital. I like to expose my kids to everything. If they have an opportunity to do something I just take them. I know that it's going to be an experience. Some day they'll say thank you mommy for everything," says Maria.

 
"She's trying really hard right now to educate herself—to learn," says Maria. "My fear is that one day because of her height she will not be able to be active economically. My fear is that she can't have a normal life."

"She's trying really hard right now to educate herself—to learn," says Maria. "My fear is that one day because of her height she will not be able to be active economically. My fear is that she can't have a normal life."

 
"I think that I learned not to limit her," Maria says. "When I took her to the therapist I would see her so weak and so blue and think 'she's not going to be able to do this or that.' Francisca constantly taught me not to limit her because she was reaching her goals."

"I think that I learned not to limit her," Maria says. "When I took her to the therapist I would see her so weak and so blue and think 'she's not going to be able to do this or that.' Francisca constantly taught me not to limit her because she was reaching her goals."


* The names in the "A Family of Heart" have been changed for confidentiality