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Meet Fallon 8th Grader Bailey Morita and her Battle with a Rare Kidney Disease

March 25, 2015
Bailey Morita with Origami Crane

Bailey Morita with Origami Crane

With just a few days remaining in March, and National Kidney Month, we introduce you to Fallon Middle School 8th grader Bailey Morita. Bailey has been fighting a rare kidney disorder, end stage renal disease, that requires her to endure 3-hour dialysis treatments at the UCSF Medical Center in San Francisco three days a week. Bailey’s journey began a year ago, late on a Friday afternoon, when her parents rushed her to a local clinic with labored breathing and fatigue. There was no warning that their lives would be forever transformed.

Emblematic of Bailey’s quiet determination is the tiny but precisely crafted origami crane that Bailey made for me while I spoke with her, and her parents, this past weekend. These tiny cranes have become her trademarked calling card, gifted to doctors, nurses and others who have helped her over the past year. Having just met Bailey, her mother Jennifer, father Keith and brother Trevor, I was humbled to receive this gift. Remarkably, and likely because of her focused determination, Bailey has maintained her standing on Fallon’s Honor Roll this past year despite spending more time away from school than in class.

After a year of battling kidney disease largely in private, Bailey decided it was time to share her story with the community, to help shine a light on a disease currently impacting millions of adults, and more rarely children like Bailey, across the country and the world.

James Morehead: How did you learn about the severity of Bailey’s condition?

The Morita Family

The Morita Family

Jennifer Morita: “It was late on a Friday when we took Bailey to a local clinic because she was complaining of fatigue and was having trouble breathing. After an exam and running a few tests the clinic told us to get Bailey to a hospital immediately. After arriving in ER the doctor performed more breathing tests and weren’t sure what was going on, and were close to sending us home, but before doing so brought in a pediatric doctor to take a look. She didn’t like the look of Bailey’s skin color or state of labored breathing and decided to do some blood work. The results from that test were way off; they re-checked the results and rather than checking us in to ValleyCare in Pleasanton they sent us to UCSF (in San Francisco) via ambulance.”

Keith Morita: “They said if it had been earlier in the evening they would have flow us via helicopter, to avoid the traffic.”

Jennifer: “They told us we were getting the million dollar ride and rushed us to UCSF.”

Morehead: One minute your daughter is tired with labored breathing, and just a few hours later your family is being rushed to UCSF. Looking back, were there any signs something was wrong before that fateful Friday evening?

Jennifer: “We’re finding out more about kidney disease and the different stages. We really want to bring more awareness of this disease to the community because there are no symptoms for early stage kidney disease and you really don’t experience symptoms until the later stages. Bailey now has end stage renal disease, and as a result requires dialysis to live. She was diagnosed with an acute kidney failure and since then the disease has progressed.”

Morehead: After arriving at UCSF what happened next?

Jennifer: “We were still in shock, and not sure what was going on – it was 4am. Bailey was being checked into a room and the doctors were describing next steps, surgery to insert a catheter for the first dialysis treatment. At this point Bailey’s kidneys were not functioning, and the dialysis was needed to perform the function of the kidney and quickly detoxify Bailey’s system. I was sitting next to Bailey, we’d been up all night at this point, the sun was rising and we were on call for the operating room. It was a nightmare, waiting for your child to go into surgery.”

Keith: “This whole process started about a year ago. Bailey was in the hospital for over ten days at first, the endless tests and blood work, the consultations, an army of doctors and specialists. And then in and out of the hospital after that first emergency. It seemed like Bailey was in the hospital more than she was at home.”

Jennifer: “Unfortunately the first catheter, which is connected directly into your arteries for the dialysis machine, didn’t work and they had to try a second catheter. For children the catheter goes directly into your heart, through your shoulder. There are only two sizes of catheter, it is so frustrating, there is a large size for adults and a small size for babies. The perfect size in terms of length is the baby – but the diameter is too narrow – so the doctors had to try again with the adult size which is wide enough but much longer.”

Keith: “Because of the adult-sized catheter if Bailey isn’t positioned in exactly the right way the dialysis machine stops because the flow isn’t sufficient. If that happens, three hours of dialysis gets longer and longer as the doctors reposition the catheter and try again.”

Jennifer: “During dialysis all Bailey thinks about is being at school with her friends. One great thing about UCSF is the nursing staff, there are nurses Bailey still keeps in touch with, as well as UCSF’s Child Life Services which is phenomenal.”

Morehead: Since that first crisis, how has your life changed in managing what is now a chronic condition?

Bailey's Origami Crane

Bailey’s Origami Crane

Keith: “Our new normal is dialysis treatments at UCSF every Monday, Wednesday and Friday. We get up at 4am to leave by 5am and get to UCSF before the Bay Area traffic kicks in. On those days Bailey tries to make it back to school but that rarely works out because of the time on the dialysis machine, the commute and the traffic. Dialysis treatments make you tired, on top of waking up so early. Bailey does go to school on Tuesday’s and Thursday’s to try and keep up, and is still managing to remain on the honor roll. Recently we started going back to a home & hospital teacher, which is what we needed to do at the end of the last school year.

“Fallon teacher Lorrin Harris, who is awesome, comes over to the house to help Bailey with her schoolwork. Bailey remained on honor roll all the way through 7th grade despite everything she’s been through and is still on honor roll. I don’t want to jinx this quarter though!”

Bailey: “I’ve had over two hundred dialysis treatments by now. I’m kind of invisible at school. I know more staff members than kids at my school now. In my Spanish class, every day that I am there, my teacher asks in Spanish ‘who’s not here?’ and everyone’s like ‘Bailey’s not here!’; but I’m sitting right next to the teacher! I’m here!”

Jennifer: “Bailey is feeling a bit distant from school but the staff has been wonderful at Fallon. Everyone on the staff knows Bailey.”

Fallon teacher Lorrin Harris (who we reached out to separately): “I worked with Bailey when she was hit with the unimaginable. I call her my firecracker! I would go to the Morita’s home 2-3 times a week to help Bailey stay on top of her studies. It was always fun because she really enjoys school. She enjoys learning. She has a great sense of humor, so working with her 1:1 was filled with laughter.

“I love seeing Bailey a few times a week on campus. She is still a firecracker, but she has days that her treatments wipe her out. To be honest, I don’t know how her family has done it! Going to UCSF three times a week, and still trying to have a ‘normal’ life is unthinkable. The Morita’s haven’t asked for help and have taken on this new lifestyle with grace. I am not the least surprised that Bailey is doing well in school and I’m certain she will make a positive change in the world with the love of her family and her firecracker personality.”

Morehead: Why is it necessary to go all the way to UCSF for the dialysis treatments? Why can’t our local hospitals provide this treatment for Bailey and other children like her?

Jennifer: “Most people on dialysis are adults and as a result you can’t just go to any hospital for pediatric dialysis. When there are kids involved in dialysis they want specialists on call in case anything goes wrong. Locally there are only adult dialysis satellites.”

Keith: “Bailey also has a team of specialists all located at UCSF.”

Morehead: You mentioned that dialysis three days per week is your new normal. Are there any other options for Bailey?

Jennifer: “A kidney transplant, in Bailey’s doctors’ eyes, is the step, but that’s a band-aid fix. The options today are either for Bailey to stay on dialysis, or to have a kidney transplant to return to a normal life for some time. We are also researching alternatives.”

Keith: “There is a time limit for a transplant, roughly 12-13 years, before you have to get back on dialysis and the list for another kidney. Dialysis also requires a very strict diet.”

Bailey: “I can’t eat anything with sodium, phosphates or potassium.”

Keith: “And those are in everything.”

Jennifer: “It is hard for the kidney to process those compounds and they can quickly become toxic between dialysis treatments, so the only option is to avoid consuming anything with those compounds. Bailey loves food, she is always hungry, so it’s really hard sticking to the necessary diet.”

Morehead: Dublin has proven to be a very supportive community. What can the community to do to help raise awareness of this disease?

Jennifer: “I want to thank Lorrin Harris for all she has done, including managing a GoFundMe campaign last year to help offset the extraordinary medical costs we are facing, as well as the community that has supported us along the way.

“One of the reasons Bailey wanted us to speak with you tonight is to help educate the community. You don’t hear about kidney disease like you do with other illnesses, especially kidney disease affecting children. When Bailey approaches a math problem she doesn’t just want the answer, she wants to understand how the math works; she gets mad if you just give her the answer. The same applies for kidney disease: she wants to really understand how to solve the problem, what’s causing this condition, and why this happens to certain people.”

Resources about kidney diseases that impact adults and children across the country, and options for making donations in Bailey’s name:

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4 Comments leave one →
  1. Keith permalink
    March 26, 2015 11:02 pm

    This was a big step for Bailey to open up and allow James to speak to her about her illness (or should I say Jennifer because Bailey was whispering answers in her ear through much of the interview. LOL.) I’m grateful for OneDublin.org to help us bring to light what we’ve been living with for the past year. Although March has been Kidney Awareness Month, this and all other life threatening illnesses have no schedules or calendars to adhere to. She has become a captive, for now, as she continues her fight. Kidney disease will always be an obstacle on her life journey, but her courage, strength and tenacity will keep her on track.

    As always, my appreciation goes out to our family and friends, UCSF Benioff Children’s Hospital, everyone at Fallon Middle School and of course “Our Village” that continues to grow and surround us with their love and support.

    Thank you James, for helping Bailey share her story.

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