Our Impact.
Avery K.
Avery was diagnosed at age 9 with the collapsing variant of FSGS. Avery never reached remission and spent the majority of her first year of diagnosis admitted in the hospital. At 9 months she reached kidney failure, at 10 months she started dialysis, and at 11 months, she had a bilateral nephrectomy. She lived on dialysis without any kidneys for 15 months traveling 180 miles round trip with her mom (a single parent) three times per week for treatment.
In April 2021, Avery received a kidney transplant and it took 15 weeks to reach remission, even with a new kidney, as the disease was already present and attacking the new kidney before she left recovery from surgery. Avery reached remission after trying both plasmapheresis and lipid aphresis. Since transplant, Avery was finally able to try going back to school after three years of homeschool with her mom; however, due to Covid 19 precautions and quarantines, she has many absences.
Although Avery’s medical expenses are covered, our organization was able to send direct financial support to Avery’s mother to help with the stress she has experienced from lost wages and transportation costs that resulted in her being behind in her household expenses.
Carter B.
Carter was diagnosed in 2019 at the age of three with the collapsing variant of FSGS. In early 2020, Carter was hospitalized with RSV (a common childhood illness), which sent Carter into complete renal failure. After living on dialysis for over a year with many complications as a result of his kidney disease, he passed away after a cardiac event at five years old.
Carter’s family experienced many difficulties in not only finding health care for Carter, but also financially due to the cost of transportation for continued dialysis, missing work, and the lack of community support.
While we wish our organization was formed earlier to be able to help Carter’s family, we are honored to have helped them by taking care of the remaining balance owed to the funeral home that facilitated Carter’s end-of-life services.
Ella was diagnosed with Nephrotic Syndrome in late 2018/early 2019. By May 2019, Ella had been hospitalized five times, each visit lasting 5-7 days at a time. Ella was ultimately diagnosed with FSGS. Ella has gone through multiple periods of relapse and remission, each causing emotional and financial stress on her family, which also consists of her mom, dad and little brother. Ella’s parents are eager to learn more about their daughter’s kidney disease and how to continue to support her, medically, mentally, and emotionally in the future.
Our organization is honored to give Ella’s family the opportunity to attend the NephCure Patient Summit held in Orlando, Florida, which offers two full days of education and speakers about the “latest in rare kidney disease research, diet and nutrition information, mental health resources, clinical trial opportunities, and more.” Additionally, Ella and her family will also have the opportunity to meet and connect with other rare kidney disease patients and families. Our Direct Patient Grant Program covered the registration cost (including hotel), and provided enough support to provide airfare for the family of four, misc. meals, and other expenses associated with their trip.
Ella R.
Oscar was diagnosed with Nephrotic Syndrome in August 2021 at 9 years old. Upon diagnosis, he was admitted to the hospital and stayed four days receiving treatment before being released to go home. Two weeks later, he had a seizure and was back in the hospital, leading to a full work-up and more meds. Oscar got through his first course of steroids, although he suffered from severe stomach and headaches as a result of his medications and gained 20 lbs. in two weeks. Thankfully, he responded well and went into remission. However, and unfortunately, one month after tapering off steroids, Oscar relapsed and has started his journey over again with steroids, hoping he responds well; otherwise, further testing and medication trials will be necessary.
This family’s biggest challenge has been financial as Oscar’s mother’s ability to work is now more limited since Oscar has yet to be present for a full week of school due to the side effects from his medication. The family has medical insurance; however, their out-of-pocket maximum is $6,000, which they met almost immediately after Oscar’s diagnosis. But, just as quick as the family met their out-of-pocket maximum, their insurance rolled over causing them to have to almost immediately meet their limits again. Additionally, Oscar’s mother has sought counseling for herself as Oscar’s recent diagnosis caused his mother fear and severe anxiety stemming from Oscar’s traumatic birth and subsequent health issues he faced as a result of those complications.
It is important for Oscar’s parents to maintain their mental and emotional health to continue to be able to provide the best possible care for him. L.C. Renal Alliance is honored to provide financial relief to Oscar’s family to go toward medical expenses and counseling, which will help the family balance those unforeseen expenses as they reach their renewed deductibles and out-of-pocket maximums for the year.
Naseem was diagnosed with Nephrotic Syndrome in October 2020 and was steroid dependent. Naseem was on seven different medications, including two for high blood pressure.
Naseem’s mother ultimately lost her job due to the care Naseem required and the multiple hospital stays. Eventually and recently, the family lost their home (due to the sale of their rental), which caught the family off guard and they lived in a hotel for a period of time spending nearly double what they paid in rent. Our organization met the family and planned to help get them into a new home by covering some of the up-front expenses they weren’t able to afford.
Unfortunately, shortly after meeting the family, on March 31, 2022, Naseem passed away less than two weeks after moving into their new home. With a direct donation to the family, our organization has eased the financial stress on this family. They can use the funds awarded to toward their rent or Naseem’s end-of-life expenses.
Naseem leaves behind his mom, dad, and three brothers (ages 9 ,7, and 4).
Brooke F. was diagnosed with steroid resistant Minimal Change Disease just after her 3rd birthday in 2019. Because Brooke was so sick at the time of her diagnosis, she spent three months in the hospital with sepsis, congestive heart failure, and acute kidney injury. She was very close to full kidney failure. More recently, Brooke has been treated with her second full round of Rituximab infusions, her first of which allowed her to maintain remission for 18 months. Brooke’s hardest struggle now is dealing with anxiety as she is easily triggered by medical and dental procedures due to the significant medical traumas she suffered at the beginning of her diagnosis.
Brooke’s family of four attended the Nephcure Patient Summit held in Orlando, Florida which offers two full days of education and speakers about the “latest in rare kidney disease research, diet and nutrition information, mental health resources, clinical trial opportunities, and more.” Additionally, Brooke and her family also had the opportunity to meet and connect with other rare kidney disease patients and families. Our Direct Patient Grant Program sent $2,000 directly to Brooke’s family to assist them with their airfare for the summit.
Tayzlee M. was born in December, 2019, with Multicystic Dysplastic kidney disease and is currently in end-stage renal failure. Since Tayzlee was two days old, she has been consistently receiving dialysis. She first started peritoneal dialysis and, due to complications with her catheter, she was forced to transition to hemodialysis. (Peritoneal dialysis can usually be managed at home; however, pediatric hemodialysis must be administered at pediatric dialysis centers, which are generally located in children’s hospitals.) As a result of this transition, Tayzlee and her parents travel more than 120 miles round trip, five times per week for hemodialysis. Each treatment usually lasts around four hours each visit, leaving little room for work, other tasks, and/or home life.
Due to complications with infection and uncontrolled blood pressure, Tayzlee has been hospitalized several times, her most recent stay lasting approximately one month. Tayzlee’s father, who is the sole financial provider of their family, missed several days of work during this time to assist.
L.C. Renal Alliance was able to provide direct assistance to Tayzlee’s family to assist with the cost of household bills while caring for Tayzlee. This grant was made possible through donations from those who want to help children and their families who are impacted by kidney diseases.
Oscar N.
Naseem E.
Brooke F.
Tayzlee M.
Theia S. was diagnosed with Nephrotic Syndrome on October 1, 2021 at two years old, and her journey has been anything but easy. As a result of Theia’s diagnosis, she and her family, consisting of her parents and two siblings, moved cross-country for the support of their family as Theia’s condition only worsened and was hospitalized more often than she was home. All of the first line medications that have been attempted for Theia, so far, have not worked. Ultimately, Theia was diagnosed with Congenital Nephrotic Syndrome, where treatments will not work. Following her diagnosis, Theia progressed to Stage 3 kidney failure in a matter of only three months. Currently, Theia receives Albumin infusions 1-2 times per week. As her parents have three children, it is difficult to find child care for the other children, and her mother is unable to work due to her very limited availability. Soon, Theia will need dialysis and once she reaches Stage 5, she will be eligible for a transplant.
To assist this family, our organization has been sending them $500.00 per month for a specified period of time to assist with the cost of gas and utilities – to help them make the ends meet and ease their financial and emotional burden.
Theia S.
Paizley W. was diagnosed with Nephrotic Syndrome on March 17, 2017 at three years old. After trying numerous medications to reach remission, Paizley ended up needing albumin and Lasix infusions 2-3 times per week. Ultimately, she was diagnosed with Congenital Nephrotic Syndrome / Focal Segmental Glomerulosclerosis, which meant there were no medications that would work for Paizley to gain remission and she would quickly progress to kidney failure and eventually require a transplant.
For 4 ½ years, Paizley continued Albumin and Lasix infusions until her kidneys were functioning at only 10% at which time she started dialysis. Unfortunately, dialysis caused new problems for Paizley as her body continuously rejected her Peritoneal Dialysis Catheter and G Tube. Paizley spent seven additional months attempting dialysis before having a bilateral nephrectomy (removing both her kidneys) and removing the infected PD catheter and placing a hemodialysis catheter in its place. After three failed catheters, dialysis finally began working. From October 2021 until early March 2022, Paizley waited for the gift of a kidney, which she finally received and is doing well with some minor hiccups along the way.
Paizley W.
Bentley W. is Paizley’s little brother. He was born only 10 days after Paizley’s journey with Nephrotic Syndrome began. Despite Paizley’s new diagnosis, Michelle (Mom), Nathen (Dad), Mason (oldest son), Saydey (oldest daughter) and Paizley were so excited to welcome their new addition.
At the time Paizley’s Nephrotic Syndrome was determined to be genetic, her family was informed that Bentley had a 25% chance of having the disease, too. Bentley’s first complication came from something completely unrelated to Nephrotic Syndrome; he had Pyloric Stenosis. He was rushed to the children’s hospital at 14 weeks old where he had surgery to re-open his stomach to small intestine. Then, in February 2018, Bentley contracted RSV and struggled to overcome it. When he started to become swollen, his pediatrician ordered labs and it was at that time his diagnosis was confirmed. Michelle said, “That day, I just fell to my knees. It was devastating knowing he was going to have to endure the same path as his sister.” Bentley was also determined to have mild-moderate pulmonary valve stenosis.
While Paizley was in end-stage renal failure and awaiting her transplant, Bentley was declining. As of July 2022, Bentley is in Stage 3 kidney failure and is receiving Albumin and Lasix treatments twice per week.
Bentley W.
In September 2021, 12-year-old Ava C. was diagnosed with Nephrotic Syndrome. Between September 2021 and February 9, 2022, Ava was repeatedly hospitalized, sometimes weeks at a time, due to her fluid retention.
At the beginning of 2022, Ava became extremely ill and had to be life-flighted to the hospital due to coming down with PGP Pneumonia and being critically ill. She was put on a ventilator for three days to allow her lungs to recover. On February 9, 2022 Ava was again taken by ambulance to the hospital with worsening symptoms. She ended up having Pneumothoraxes (both lungs collapsed), had to be back on the ventilator, and get a chest tube. For the next 110 days, Ava remained on the ventilator, ECMO, and Dialysis. She lost 80 lbs. of water weight in 3 weeks.
After finally being released from the hospital on May 25, 2022, she went to stay at the Ronald McDonald house, where she and her mother continue to stay. Throughout this traumatic medical experience, Ava’s mother lost her job, her home and her car. They lost most everything they owned and are working on trying to get back on their feet while Ava continues dialysis, OT three days per week, and multiple doctors’ appointments. Meanwhile Ava is working toward chemical nephrectomy and eventually a transplant – a process that could take an entire year due to her extremely weakened immune system.
After losing so much, Ava’s family is struggling to make ends meet, get back and forth to and from work, balance Ava’s medical necessities and continue working. The L.C. Renal Alliance Direct Patient Grant Program is helping this family by providing monthly grant installments to them to assist with their necessary household expenses in hopes it helps ease the financial burden, so this family can focus on each other.