Family #21 – Crescent City, CA – Recipients of a $3,000 Grant
In October 2018, this family’s infant son began having seizures. He was rushed to a local hospital where he was diagnosed with Sturge-Weber Syndrome, a condition that negatively impacts the development of blood cells, thus causing issues in the brain, skin and eyes. The child was later transferred seven hours south to a specialty hospital in Oakland, after the family learned that only one hospital in northern California would take their son’s case. While at the hospital, they learned that he would also need to have 100cm of his colon removed, due to a diagnosis of another rare disease.
For weeks, the father drove seven hours between Oakland and their home to care for their son and also work as many shifts of his healthcare-related job as he could. Finally, after exhausting all of his vacation time and after seeing his son slowly decline, he opted to use his unpaid FMLA time to be with his family in the hospital, where his son will remain for, at least, another two months.
In addition to their application, thirteen nurses and technicians wrote letters to Keep Swimming Foundation to serve as a referral for this family. They raved about the family’s character. One nurse wrote, “I have had the privilege of working with children both in and out of the healthcare setting for over ten years. In that time, I have been fortunate enough to spend a significant amount of time getting to know kids and their respective families. I can honestly say there is no family more deserving of recognition for their courage, love and sacrifices than that of the [Redacted for Privacy] Family.” Another nurse wrote, “It is so impressive the way [his] parents sleep at the bedside and provide care for him day and night. He requires painful dressing changes every two to three hours around the clock. [He] cries during these dressing changes and his parents get up every few hours in the day and night to comfort him, sing to him, read to him, hold him during these dressing changes as well as assist with the actual cleaning and redressing of his wounds. They actively participate in his physical therapy, occupational therapy and speech therapy. They assist with daily baths, washing his clothes and the weekly line dressing changes.”
This grant will enable the family to afford many of the non-medical expenses they have been struggling to afford, such as bedside meals and lodging.
Family #20 – Batesville, AR – Recipients of a $3,000 Grant
On December 28, 2018, two boys were born prematurely in a small town in Arkansas. After an emergency cesarean section, the parents were told that one needed to be rushed to a hospital two hours away in Little Rock. The family learned that their son needed emergency surgery to repair an esophageal atresia, a congenital birth defect in which both ends of the esophagus do not connect, leaving a disconnect to the stomach. Their son survived the surgery, but ultimately, the surgery was unsuccessful. At this point, the doctors discovered several holes in his heart, as well as an esophageal fistula, a condition in which there is little to no separation from the trachea and the esophagus. Their son later received another surgery to repair the fistula.
Between January and March, their son received several surgeries in an attempt to repair a list of congenital-related issues, including a procedure on his liver. During this window, the father was laid off from his job, and they sold their car in an attempt to make ends meet. After the staggering amount of non-medical and medical-related debt the family took on, they found themselves two months behind on their mortgage (going on three) and were at risk of losing their home.
Keep Swimming Foundation’s grant will provide needed mortgage payments and $500 for bedside meals going forward, as their son is expected to remain hospitalized for several more weeks.
Family #19 – Kansas City, MO – Recipients of a $1,500 Grant
This family’s infant son was diagnosed with a congenital heart defect known as Hypoplastic Left Heart Syndrome (HLHS), a condition in which the left side of the heart does not develop properly. Between January and late February 2019, their son remained in a Kansas City pediatric hospital as he underwent various procedures and monitoring to repair the left side of his heart. He has since been discharged, but is expected to undergo another major procedure in April, which will cause the family to spend another extended stay in the hospital.
During this stay, the mother left her job and the father significantly cut his work schedule back so that they could be with their son in the hospital around the clock each week.
This grant will help the family pay off a large chunk of the debt they took on while caring for their son in the hospital.
Family #18 – Corning, NY – Recipients of a $1,500 Grant
Originally from the southwest region of New York, this family’s teenage daughter (who is battling Cystic Fibrosis and waiting for a new pair of lungs) is receiving specialty care in Cleveland.
The patient’s single mother works a full-time job in New York so that her daughter can have the insurance she needs. After work each Friday, the mother drives five hours to Cleveland where she spends the weekend and the majority of each Monday with her daughter, before driving back to New York to work full-time between Tuesday and Friday. The mother has repeated this process every week since late December 2018.
This grant will enable the mother to afford the gasoline needed to make these extended trips from New York to Cleveland throughout the coming months while her daughter waits for a new pair of lungs in the Cleveland hospital.
Family #17 – Mt. Vernon, IL – Recipients of a $1,200 Grant
This family’s one-year-old son was diagnosed with end-stage liver failure. Additional testing showed that he needed not only a liver transplant, but also a small bowel and pancreas transplant.
For months, this family drove to St. Louis weekly for check-up appointments and labs, until their son grew sicker and spent the majority of 2018 in a St. Louis hospital. In October 2018, the family was referred and transferred to a pediatric transplant center in Pittsburgh, PA. On Thanksgiving Day, their son received his transplants. Due to complications with the transplants, the child’s mother stayed with him in Pittsburgh and the father remained home with their other child until the family was eventually discharged from the hospital on January 31, 2019.
Currently, the child and his mother are in a step-down rehabilitation facility and they plan on returning to their Illinois home in the coming weeks.
This grant will help the mother afford the non-medical expenses she faces while caring for her son in Pittsburgh.
Family #16 - Atlanta, GA – Recipients of a $3,000 Grant (2018 Q4 Recipients)
This Georgia family’s infant daughter experienced a traumatic birthing experience and was without oxygen for the first twenty minutes of her life, due to her mother’s uterus rupturing during childbirth. Once stabilized, she was diagnosed with Hypoxic Ischemic Encephalopathy (HIE) in early October. HIE is a condition that occurs in infants in which brain tissue is destroyed due to a lack of oxygen. Their daughter was placed in the hospital’s NICU nursery before being safely transported 200 miles north to a hospital in Atlanta, Georgia. This family’s baby girl remained hospitalized until the final days of 2018, when they returned to their small town in rural Georgia.
Given the child’s dire need for medical care, the family was asked by their medical staff to relocate to a new home in a larger town where proper medical care is available. Unfortunately, due to medical bills, and the non-medical expenses the family endured while living 200 miles from home, compiled with the father’s need to take work off when he was with his daughter, the family was financially drained and unable to afford the rent and security deposit required to change homes. In addition, the family’s current home is in a location that was deemed unreachable by home healthcare agencies, thus leaving the child’s mother unable to work while she remains home to manage her daughter’s new lifesaving machines and feeding tube.
With this grant, Keep Swimming Foundation has promised this Georgia family $3,000 that will be provided in multiple, smaller grant checks between January and May 2019. These grant checks will cover the family’s monthly rent for five months.
This grant and the new home will enable the child to receive home healthcare, the mother will be able to return to work on a part-time basis, and the father will have the peace of mind knowing he can return to his full-time work schedule, all while giving them the opportunity to save money and maintain their new home so that their daughter can have a sterile and safe environment to grow near a preferred hospital.
The family has paid their first month’s rent in addition to the security deposit. They moved into their new home earlier this week.
Family #15 – Fresno, CA – Recipients of a $3,000 Grant (2018 Q4 Recipients)
In July 2018, the father of this California family was boarding a cruise ship in Seattle for a vacation to Alaska when he suddenly collapsed. Paramedics were called and within hours he was placed on life support. His children were informed and immediately flew to Seattle from their hometowns and college campuses to say goodbye to their father. While at the hospital, he was diagnosed with interstitial lung disease, a disease that results in progressive scarring of the lungs. Miraculously, he pulled through. Three days later, he was deemed healthy enough to be airlifted to a hospital in San Francisco, where he underwent dozens of tests to be added to the organ transplant wait list. In mid-August his life was saved when he received a bi-lateral lung transplant. Since receiving the transplants, he has remained in the Intensive Care Unit of his San Francisco hospital battling numerous infections and post-surgical issues.
His wife, a high school teacher, relocated to San Francisco to be with him. Despite the hospital negotiating a lower fee for her nightly hotel stays, due to the high cost of San Francisco, she has compiled nearly $10,000 in debt related to lodging, and several thousand additional dollars related to meals and public transportation.
We recently received positive news that he overcame a major hurdle and they are hopeful he will be moving to a step-down floor next week, which is a major step towards their return to Fresno and normalcy, where he serves his community as a police officer.
Family #14 – Akron, OH – Recipients of a $300 Grant (2018 Q4 Recipients)
In May 2018, this family’s first child was born. Not long after the child’s birth, irregularities in the initial lab results led the family to be referred to a hospital in Cleveland for a series of DNA tests. It was there the child was diagnosed with Krabbe Disease, a rare disorder of the nervous system. The family was referred to a specialist in Pittsburgh, who suggested a bone marrow transplant to help slow down the effects of the disease. The first transplant failed, but we are told the second was a success. The mother has been living in Pittsburgh with the child at the hospital, while the father remains employed full-time in Akron and visits the family with supplies during the weekends. The family submitted receipts pertaining to the father’s gasoline and tollway expenses. This grant covers the total amount of receipts submitted to Keep Swimming Foundation.
Family #13 - Houston, TX – Recipients of a $1,500 Grant (2018 Q3 Recipients)
In the fall of 2017, this Houston family’s son was a junior in high school when he collapsed on the sidelines during a Friday night football game. He was placed in an ambulance and rushed to the local hospital where he was diagnosed with a severe brain bleed and had a portion of his skull removed to alleviate pressure on his brain. In the coming days, he would fight for his life while his mother, sister and father waited at his bedside before being airlifted to a hospital in Arkansas. Despite being told to “pull the plug”, his mother persisted that her son would defy the odds. In December, with the help of therapists, their son was able to walk out of the Arkansas hospital. The mother of the family underwent countless hours of training so that she could care for her son in the comfort of their northeast Texas home. In June, he was accepted into a rehabilitation program in Houston. Family members are not allowed to stay with their loved one at the rehabilitation facility overnight. In turn, to cut down on costs, the mother relocated five hours from the family home to an RV in Houston so that she could lower the cost of living and offer her son love and support during visiting hours. This grant will cover many of the costs associated with his mother’s stay in Houston, such as trailer park fees, bedside meals, parking at the rehabilitation facility and gasoline for her drive to-and-from her new home and son’s bed.
Family #12 – St. Louis, MO – Recipients of a $1,500 Grant (2018 Q3 Recipients)
This family’s story begins in April 2018. The father of the family fell from a tall ladder while at work and suffered many lower-body bone injuries and later underwent surgery and several months of rehabilitation. Throughout rehabilitation, his health began to decline, leading his doctors to run several tests in early August. It was then that they discovered his liver and kidneys were also severely damaged during the fall and he was immediately admitted to a hospital in the downtown area. His daughter (his only child and present family member) is a nurse in Milwaukee, Wisconsin. Since his hospitalization, her life has revolved around the care of others. When she is not working her typical twelve-hour shift, she is driving from Milwaukee to St. Louis so that she can oversee her father’s care as his health rapidly declines. In recent weeks, she has switched jobs to a hospital one hour outside of St. Louis and relocated to the St. Louis region so that she can assure that her father is receiving the best possible healthcare. This grant will cover the entirety of the money she has spent since August on gasoline, bedside meals and parking, and will provide a small amount to cover her next tank of gas.
Family #11– Philadelphia, PA – Recipients of a $1,500 Grant (2018 Q3 Recipients)
In November 2017, the husband of this northeast couple was admitted to a downtown Philadelphia hospital where he learned of his need for a heart and lung transplant. After months of waiting, he received the gift of life. Unfortunately, he experienced several post-transplant complications and remains in the hospital as of October 2018. His wife has been near his bedside almost every day. However, due to the rising debt they were experiencing, she had to take a part-time job so that she could afford to be near him whenever she isn’t working. The family’s social worker informed us that he has made great progress and will soon be discharged. The necessary rehabilitation to overcome his deconditioning means that they must live nearby as opposed to driving several hours each day. This grant will help the couple pay down a large portion of debt that the wife has accrued from parking at the hospital, driving to-and-from her job and the hospital, as well as the countless meals she has consumed at her husband’s bedside.
Family #10 – Columbus, OH – Recipients of a $650 Grant (2018 Q3 Recipients)
This Ohio family immigrated to America not long before their infant son was born and diagnosed with end-stage liver failure. After undergoing a series of tests, the family was relocated to a hospital in downtown Pittsburgh, Pennsylvania two and half hours from their home. In July, their son received his lifesaving liver transplant and was discharged to a nearby facility so that he can receive close supervision from the family’s medical team. The father has been unable to work since the early summer and they are in dire need of financial assistance. This grant will cover the family’s lodging as well as many meals and gasoline expenses.
Family #9 – Lexington, KY – Recipients of a $750 Grant (2018 Q3 Recipients)
Ten weeks prior to receiving his heart transplant, this family’s infant son was diagnosed with a congenital heart defect and taken to a hospital in Cincinnati, OH – two hours from the family’s home. The child’s mother, who is also the sole provider, was required to take a leave of absence from her job so that she could be near her son and also care for her eleven-year-old son in the process. Their son will be required to remain near the hospital for management throughout the coming months. This grant will help by covering a large portion of their lodging expenses in Cincinnati.
Family #8 - Milwaukee, WI - Recipients of a $1,000 Grant (2018 Q2 Recipients)
This Milwaukee family's teenage son was diagnosed with Acute Myeloid Leukemia. His mother, a single parent of three children and the sole wage earner, is on the verge of losing her family's home after needing to cut back on her work schedule due to her son's condition. Her son has spent nearly sixty consecutive days in the hospital undergoing chemotherapy and various other cancer-related treatments. Upon learning she would become the recipient of a Keep Swimming Foundation grant, through a translator, the mother exclaimed, "God bless your foundation! Thank you! Thank you! Thank you!"
Family #7 - Los Angeles, CA - Recipients of a $1,000 Grant (2018 Q2 Recipients)
Our second Q2 family is, sadly, very familiar with the inner workings of a hospital. Their four year-old daughter has spent over 154 combined days in critical care dating back to August 2017. Their most recent stay began in early May 2018, which lasted just under seventy days. Their daughter is battling a very rare condition called Fibrodysplasia Ossifications Progressiva. In a letter from their physician, the family was described as "A wonderful family" and "Amazing Advocates for [their daughter]". Upon learning of the news, their nurse, (who nominated the family) became emotional and shared with us that on the same day they were learning of the $1,000 grant, they were receiving a surprise from their medical team and being sent home.
Family #6 - Philadelphia, PA - Recipients of a $750 Grant (2018 Q2 Recipients)
The third grant of Q2 has been provided to a family in Philadelphia whose daughter suffers from Cystic Fibrosis and is currently listed and waiting for a double lung transplant. Like most individuals on the transplant wait list, their daughter has been in-and-out of the hospital undergoing various treatments as her condition changes over time. Throughout this quarter, the family has endured numerous hospital stays ranging from two to three weeks. One of their daughter's admissions lasted exactly twenty-one days, thus meeting the application requirements. This grant helps cover their daily hospital parking expense of $21 per day, as well as their constant need for gasoline, which they go through often during their daily two-hour drive back-and-forth from home to the hospital.
Family #5 - Chicago, IL - Recipient of a $500 Grant (2018 Q2 Recipients)
This family’s son, a college student, was diagnosed with Hodgkins Lymphoma in early 2016. After nearly a year of treatment, he learned that he was in remission later that year. He returned to college, but then learned in late December 2017 that the cancer had returned. Once again, he left college and began undergoing outpatient treatment. Finally, in May 2018, he was admitted to a Chicago hospital for several rounds of chemotherapy and a stem cell transplant. The family submitted several receipts for gasoline and parking pertaining to the period of time related to his stem cell transplant. This grant covers the total amount submitted.
Family #4– Orlando, FL – Recipients of a $650 Grant (2018 Q1 Recipients)
The daughter of this family was hospitalized after suffering complications stemming from a transplant. After giving birth, the patient received her transplant in late December. As of late Spring 2018, she had not yet left the hospital and her family was supporting her by babysitting her infant child and toddler while her father oversaw her care in the critical care unit of an Orlando hospital. The family humbly submitted a week of hotel stays and meals. This grant covers the full amount requested.
Family #3 – Chicago, IL – Recipients of a $750 Grant (2018 Q1 Recipients)
The recipients of the third grant in our foundation’s history is a couple from Chicago whose first child was born with a congenital heart defect. Their child spent his entire life in the NICU nursery either preparing for or recovering from surgery. Sadly, in early March, the child passed away in his mother’s arms. We were told by the family’s social worker that the couple rarely left the hospital. If they did, it was to shower at a nearby hotel and grab a meal while their spouse stayed with their baby. The couple submitted the total hotel, parking and meal expenses they accrued throughout their child’s life and battle. This grant covers the full amount requested.
Family #2 – Las Vegas, NV – Recipients of a $1,000 Grant (2018 Q1 Recipients)
The foundation's second selected family is a couple who were described by their primary nurse as, “... a truly lovely couple who never leave each other’s side.” The husband was diagnosed with multiple organ failure several months ago and required an emergency helicopter ride to take him and his wife from their home in Nevada to southern California where he could receive proper treatment. After spending several months in the hospital, the family was discharged to a nearby transplant house until his doctors felt that he was stable enough to return to his home in Nevada. After spending the better portion of March in the transplant home, we are happy to announce that both the husband and wife were recently able to return home to Nevada. However, due to the husband's poor health, the couple was not capable of flying, so they had to rent a vehicle large enough to store several tanks of oxygen for their return trip from southern California to Nevada. In total, the couple (primarily the wife while her husband was stabilized in the hospital) has accrued nearly $10,000 of debt related to meals and lodging dating back to early January.
Family #1 – Philadelphia, PA – Recipients of a $1,000 Grant (2018 Q1 Recipients)
After their daughter received a bilateral lung transplant in late 2017, the foundation's first selected family was anticipating a quick recovery. Unfortunately, due to a wide array of complications, their daughter remained under the close supervision of medical staff. In early 2018, the patient’s mother moved her life from the suburbs of New Jersey to downtown Philadelphia so that she could oversee her daughter’s care. In doing so, she has accrued over $10,000 in expenses, primarily related to lodging at nearby hotels and at a local transplant house, which offers families of transplant patients a place to stay at a discounted rate while their loved one undergoes care.
The family’s social worker wrote a letter of recommendation to Keep Swimming Foundation’s Board of Directors where she summarized the family’s attitude. In this letter, the social worker wrote, “I have gotten to know the patient and her mother well over these last several months; I am confident in saying that the world needs more people like them who are able to maintain a sense of humor, bright attitude and keep the hope.”