2019 GRANT Recipient Stories:
Family #32 – Brooklyn, NY – Recipients of a $3,500 Grant (2019 Q3 Recipients)
In October 2018, the devoted wife and mother of four was diagnosed with Acute Lymphoblastic Leukemia (ALL). She underwent intensive chemotherapy (both inpatient and outpatient), radiation, targeted treatment as well as an allogeneic bone marrow transplant. During her treatment, she developed Graft vs. Host Disease (GVHD), a condition in which the transplanted bone marrow or stem cells attack the recipient. As a result of GVHD, this mother of four was hospitalized on July 29, 2019, where she required intensive care.
Between the loss of the wife’s income and the husband’s significantly decreased hours, (due to his time at his wife’s bedside and his need to look after the children, one of whom has special needs), the family fell significantly behind on their mortgage. Sadly, in early October, the wife passed away due to complications stemming from GVHD. When Keep Swimming Foundation’s Board of Directors met to select families, the father had received eviction notices and was working overtime in an attempt to avoid homelessness.
This grant alleviates a very large portion of the family’s overdue rent during their time of grieving.
Family #31– La Harpe, IL – Recipients of a $3,500 Grant (2019 Q3 Recipients)
A father with a diagnosis of incurable Carcinoid Cancer in 2016 and a daughter recently diagnosed with B-cell ALL Acute Leukemia in August 2019 are two members in an eight-person household who are critically ill.
The daughter was in the midst of her studies to become a nurse (inspired by the caretakers her dad had encountered in recent years) when she received the diagnosis. Given the advanced state of her cancer, she was forced to pull herself out of school and begin advanced treatment at a specialty hospital in St. Louis, Missouri.
As his health allows, the father works at a farm implement dealership to assist his family with mounting medical bills and travel expenses. The mother has taken a leave of absence from work to stay by the daughter’s side as she continues to fight her illness. As the decline in the family’s income remains, the bills, travel expenses, bedside meals and hotel accommodations continue to rise. To reach the daughter, her siblings and father travel 191 miles each way. Oftentimes, it is extremely difficult for the father to make the trip or to stay for a lengthy period of time in the hospital room with his declining health. The expenses continue to grow as the daughter undergoes rounds of spinal chemotherapy and various other cancer-related treatments.
The daughter’s discharge date is currently unknown, but if no adverse symptoms arise, she will be able to return home in late October 2019 for a short period of time before another lengthy readmission.
Keep Swimming Foundation’s grant will provide the necessary support for her siblings and father to afford the trips back-and-forth to the hospital, bedside meals, as well as the mother’s required lodging and other non-medical expenses she faces while caring for their daughter in St. Louis.
Family #30 – Atlanta, GA – Recipients of $700 Grant (2019 Q3 Recipients)
The teenage daughter of this large, Georgia family was stricken with a rare disorder called anti-NMDA receptor encephalitis, an autoimmune neurological disease that has left her with intermittent seizures, feeding difficulties, and respiratory failure.
Upon learning of this condition, she was forced to drop out of school and began receiving treatment at an Atlanta hospital, where she remains today. The mother visits daily and is currently working towards preparing their home to be accessible after a planned early November discharge.
The Junior Board chose to provide these funds to this Atlanta family to cover the bedside meals that the mother has incurred while visiting her daughter. This grant covers slightly more than the total value of expenses submitted to Keep Swimming Foundation.
Family #29 – Stevens Point, WI – Recipient of $550 Grant (2019 Q3 Recipients)
In February 2019, this family’s son was diagnosed with Severe Aplastic Anemia, a disease in which the bone marrow does not make enough blood cells for the body. He was hospitalized a month later, then discharged in August, and has since been admitted twice for acute issues. During his treatment, he received a bone marrow transplant and is now on the road to recovery, working with physical and occupational therapy to regain his strength.
Throughout the child’s extended hospital stay in downtown Milwaukee, the mother made nearly daily round trips to-and-from Steven’s Point, WI to downtown Milwaukee (155 miles each way).
The Junior Board has chosen to award this grant to this Wisconsin family to cover the gasoline expenses they incurred during their child’s inpatient treatment.
Family #28 – Camas, WA – Recipients of $3,000 Grant (2019 Q3 Recipients)
After an unsuccessful open-heart surgery in February 2019, which resulted in end-stage heart failure, this family’s son was transported to a hospital three hours south of their home via helicopter on April 24, 2019.
The son received a heart transplant on May 4, 2019, but a week later his kidneys failed, and many other complications arose. He was put on life assisting ECMO for a vast length of his admission and has suffered vocal cord dysfunction, needing a tracheostomy to facilitate oxygenation support. He has been inpatient for over 150 days at the hospital with extensive medical complexities that have required ICU level care.
In order to stay locally to support her son in daily treatments and therapies, the mother was forced to leave her job. Due to the length of the stay, the family’s life savings has run dry. They have no other sources of financial aid support and have been forced to pay out-of-pocket for all expenses with no timeline for discharge.
Currently, the son remains hospitalized and listed for a kidney transplant. However, doctors remain hopeful that his kidney failure may be temporary and he will be able to avoid a second solid organ transplant. When speaking with the mother, she immediately choked back her tears and shared how she had just begun trying to figure out where she could live, as she could no longer afford the significantly discounted hotel rate.
This grant will provide the mother with sixty additional days of lodging as her son fights for a brighter future.
Family #27 – Hays, KS – Recipients of $1,000 Grant (2019 Q3 Recipients)
This family of three welcomed their newborn daughter on July 10, 2019. They weren’t prepared for the turmoil they were about to endure when they found out their infant daughter was prenatally diagnosed with a complex rare single left ventricle heart disease along with several other life-threatening heart conditions.
The infant daughter underwent cardiac surgery on July 18, 2019, and has since remained in the pediatric intensive care unit due to various issues that require carefully monitored support.
As of now, she will remain inpatient until her second open heart surgery at 4-6 months old and it is likely she will remain hospitalized for several more months.
The mother has relocated just under four hours from home to remain at her baby’s bedside in the hospital. Her husband stays home to care for their other daughter and provide an income for the family, but they make the lengthy drive every weekend so the family can be together.
Keep Swimming Foundation’s grant will enable the family to afford various non-medical expenses and help alleviate the out-of-pocket costs they endure as they stay strong for their baby and continue to keep hope.
Family #26 – Delhi, CA – Recipients of a $3,000 Grant (2019 Q2 Recipients)
After four years of waiting for a lung transplant, the mother of this 3-person family received the lifesaving phone call in February 2019. Her daughter, and only child, was able to take off six weeks of work so that she could serve as the primary caretaker for her mother while she recovered at home.
On March 26, 2019, the mother was readmitted to the hospital due to complications from the surgery. At this point, the daughter’s six-week reprieve from work was coming to an end. Upon requesting additional time off, she was terminated. The daughter (along with her father) moved to San Francisco, where her mother was being treated by the team that performed the transplant. After numerous complications, the mother remains hospitalized in San Francisco where she was recently removed from an induced coma.
Since being admitted to the hospital in March, the daughter has depleted her life’s savings on lodging and meals. After spending thousands of dollars on lodging, both the daughter and father moved into the mother’s hospital room full-time and converted their father’s truck into their bedroom where they slept for several weeks until a social worker was able to negotiate a fair and affordable nightly rate through a local connection.
This grant will replenish the daughter’s savings account and enable them to stay in San Francisco with their mother while she fights to return to normalcy.
Family #25 – Kansas City, MO – Recipients of a $2,000 Grant (2019 Q2 Recipients)
Upon completing several tests on this Missouri family’s baby girl, doctors at their local hospital discovered that her heart was not functioning properly. The family was rushed to a specialty pediatric hospital in Kansas City where it was discovered that a congenital heart defect was causing blood to flood into her lungs. In addition, pediatric specialists also discovered a grade 4 brain bleed. Despite being told that their daughter would not make it through the weekend, the child survived and grew strong enough to undergo the first of three surgeries to repair her heart. In December 2018, after six months of inpatient care, the baby was discharged. In April 2019, the child was readmitted for her second of the three surgeries where she and her family remained under inpatient care for six weeks.
We just learned that, last weekend, the family celebrated their daughter’s first birthday at their home with friends and family. This grant covers the entirety of the family’s submitted expenses related to gasoline, meals and lodging during the child’s second surgery and hospital stay.
Family #24 – Harrodsburg, KY – Recipients of a $1,500 Grant (2019 Q2 Recipients)
After multiple rounds of IVF, this Kentucky couple learned that they were pregnant with their first child. Not long after, their infant son was born prematurely. After exhibiting several respiratory issues, their son was diagnosed with HFGS, a very rare genetic syndrome. The child was transferred to a specialized hospital in Cincinnati where he has been for the past three weeks. The child’s mother stays with him daily in the hospital before retiring to a nearby hotel room in downtown Cincinnati.
We just learned that the mother has been accepted into a nearby housing facility while the child undergoes further treatment. This grant will pay down the vast majority of her outstanding bill from the hotel.
Family #23 – Bloomington, IL – Recipients of a $1,550 Grant – Junior Board Selection (2019 Q2 Recipients)
The patient, a decorated veteran (Purple Heart Medal), learned that he was diagnosed with Leukemia before the holidays last December. After undergoing chemotherapy treatment at a local hospital, his care was transferred to a hospital in downtown Chicago after he showed signs of kidney failure, heart failure, blood infections, and several other Leukemia-related complications, including a total loss of hearing. At the family’s request, he was later transferred to another Chicago-based hospital that was capable of providing a higher level of care.
Between March and June 2019, he was discharged and readmitted several times until finally returning home in June 2019.
Throughout those months, both his sister and mother took shifts visiting and caring for him until late May when his sister gave birth and his mother became the primary caretaker.
The Junior Board selected this family to receive a grant so that both the mother and daughter can recoup the non-medical debt they incurred between April and June.
Family #22 – Atlanta, GA – Recipients of a $650 Grant – Junior Board Selection (2019 Q2 Recipients)
In March 2019, this family’s first child was born with Arthrogryposis Multiplex Congenita, a congenital condition that causes multiple joints in the patient to form abnormally. The child was later transferred from their local hospital in southern Georgia to a specialized hospital in downtown Atlanta, where the child received a tracheostomy.
After a five-week hospital stay, the child was discharged. His mother, a third grade elementary school teacher, has since quit her job to provide 24-hour care. The Junior Board has chosen to award this grant to the family to aid them with various expenses, including bedside meals, and gasoline for their trips to-and-from the hospital.
Family #21 – Crescent City, CA – Recipients of a $3,000 Grant (2019 Q1 Recipients)
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 (2019 Q1 Recipients)
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 (2019 Q1 Recipients)
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 (2019 Q1 Recipients)
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 (2019 Q1 Recipients)
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.