A single mother, Delaney’s mom was expecting a healthy baby girl. Shortly after her Delaney's birth, mom learned Delaney had complex, congenital heart disease requiring open heart surgery. Delaney was hospitalized for nearly a month following her surgery, and she was discharged home with complex ongoing medical needs. Mom had planned to send Delaney to daycare and return to work, but she was not able to do so due to Delaney's medical fragility. Mom has worked hard to establish a sustainable housing plan for her family and The Extra Step made sure that the rent for the month was paid for to encourage mom to focus her time on what is most suitable for Delaney.
After losing their daughter in 2014 to Late Infantile Batten Disease at the tender age of 8, and then losing their son midterm just 10 months later, Zena’s parents really didn't think there was much more that could be thrown at them. They were wrong. Shortly after Zena’s birth, she was immediately transferred to Children’s due to her complex congenital heart disease. She has undergone multiple heart surgeries, at 3 days old and later at 4 months old. Zena was also born with an unexpected deformation on her face in addition to her HLHS. The concern that formed around that additional complication sent Zena’s surgeon on a completely different route for repairs to her heart. The surgeries started with Pulmonary Artery banding, and then a Balloon Atrial Septostomy three weeks later. Even with struggling a bit with her feedings, Zelena has proved to be an amazingly strong little girl and is known as Zena the Heart Warrior Princess to most. She has 4 brothers, and 1 sister at home. The Extra Step assisted Zena’s family with their medical expenses.
Romeo is a sweet, but shy kid who enjoys playing basketball with his father. At 10 years old, he received a kidney transplant from his father in June of 2012. Romeo has been doing very well post-transplant. His mother recently completed college and his father was working full time until he was laid off from work and is currently looking for another job. After the expensive medical bills, the family was left with no savings and with dad being jobless for a while, the family needed help paying for their utilities bill. The Extra Step was able to afford them this assistance. Additionally, Romeo is a big fan of Batman and wants everyone to know that he believes Batman wins over Superman.
Jonah has a history of Batten's disease (an extremely rare and fatal autosomal recessive neurodegenerative disorder), Spastic Quadriplegia, Intractable Epilepsy, Blindness, Scoliosis, and Osteopenia. His mother has been at his bedside throughout the hospitalization. His father is the breadwinner of the family but Children's requested his presence at the hospital. Jonah's father desperately wants to be at the hospital with his son, but knows that he has bills to pay. The Extra Step was able to cover the families expenses while they go through unimaginable circumstances.
Neyda was diagnosed with neuromuscular disorder. Her family took the diagnosis pretty hard not only from the strain on their daughter’s health but also from the strain on the family’s savings. The Extra Step was able to assist the family with various expenses with numerous medical appointments.
Abralyn was hospitalized at 2 weeks old after her primary physician had heard a slight heart murmur. While thinking this was a typical VSD, the thought was that the murmur would close on its own. 4 weeks later, the doctors found the murmur to be more serious than previously thought and that Abralyn’s left side of her heart was enlarged. In April of 2016 a heart catheter was put in place but problems with the device later led to it dislodging into the pulmonary artery which made the family have to make the decision to undergo open heart surgery. After a successful surgery, and long stay at the hospital, Abralyn is back to being a normal baby, with a healthy weight and bright smile. The Extra Step provided her family with medical expense payments.
Crysta is a 16 year old special needs child. Crysta was in the intensive care unit (ICU) for months. She has multiple needs and required both a ventilator and a tracheostomy. Her family was in need financial assistance to help with the daily family expenses since mom and dad had to cut back on their hours to stay with Crysta while she was in the hospital for so long. The Extra Step was happy to assist this family in need.
Maria is a medically complex two year old little girl. After her sister recently was discharged from a lengthy hospital stay, Maria was soon admitted for a similar complication of the heart. Fortunately, the two little girls have been discharged from the hospital and are living active young lives. However, due to both girls having lengthy stays at the hospital, both parents, who work shifts in a restaurant, had to take off many days at work which cost them their usual wages. The Extra Step compensated this family for the missed time they were at work watching over their two daughters.
Levi is an eight year old patient who has Cystic Fibrosis and a neuromuscular disease that he has lived with most of his life. Shortly after his birth and the medical complications, his mom left, leaving his dad, who is disabled by severe epilepsy and Levi’s grandma to take care of him. Levi requires the air conditioning to run on high from April thru October. In 2016, the bills piled up so much that grandma and dad didn’t have enough money to pay for the energy bill one month after grandma became ill from kidney disease and couldn’t work anymore. The Extra Step was able to cover the energy bill so that grandma could continue to focus on getting better and watching over her two boys.
In September 2007, Toby was diagnosed with Stage 4 hepatoblastoma at 11 months old and was only given a 10% chance of survival. Over the next year he underwent 6 rounds of chemotherapy, two lung surgeries and two liver transplants. On August 5, 2008, Toby became very sick and was admitted to Children’s, and by August 8, 2008 he had lost so much fluid from vomiting and diarrhea that he became hypovolemic and went into cardiac arrest. He survived all this only to wake up with global ischemic anoxic brain injury resulting in cerebral palsy. Toby is currently going to speech, occupational, and physical therapy twice a week. With hopes of the positive results from others, Toby was referred to a physical therapist facility that offers Lokomat therapy (machine he is pictured with). Unfortunately, this facility does not accept Medicaid or the insurance his family has so the treatment has been very expensive. The Extra Step has provided Toby’s family with financial assistance to cover multiple therapy visits so that he may continue his treatment without any lapse in service.
Bryan is an energetic 14 year old boy who has complex health issues with his primary diagnosis being Lennox-Gastaut syndrome which is a very severe form of epilepsy. He is also diagnosed with Asthma, scoliosis, GERD, and requires a g-tube. His family receives government housing assistance and were previously residing in an apartment that Mom says had severe mold before The Extra Step was able to assist in moving the family. The complex never fixed the problem even with mom making several work order requests. With Bryan being hospitalized 3 times in 2 months, mom believes the mold was causing Bryan to have exacerbations. The family was quickly able to move out and provide Bryan a more suitable place to live.
Lincoln is 4 months old and was diagnosed with Cystic Fibrosis at birth. The family was in need of financial assistance for transportation for the many needed trips to the hospital. The Extra Step Foundation was glad we could help this family.
Jasiah is a 6 year old boy who received a kidney transplant from his mother in August 2015. Jasiah lives with his mother, two brothers and one sister. Jasiah’s mom has been a stay at home mother so that she can care for Jasiah prior to transplant and post transplant. Due to the limited income his family has, The Extra Step was able to pay for their upcoming bills to be able to keep electricity and water on in their home and take care of some of their living expenses.. Jasiah is a care free young boy who loves the Teenage Mutant Ninja turtles!
Jaiden is 5 months old and was born premature and has Down Syndrome along with multiple other medical issues. He has a Tracheostomy and a feeding tube, requires the assistance of a ventilator to breathe at night when he sleeps and has been hospitalized since his birth. The Extra Step Foundation was able to assist this family by paying for their down payment on an apartment.
Matthew (9 yrs) and Johnson (7 yrs) were both diagnosed with mitochondrial disease. While Matthew is more effected by the disease currently, Johnson is not far behind. Matthew is currently wheelchair bound, partially blind, only tube fed and has sleep apnea. Johnson is deaf, currently losing his ability to walk and seems to be on the same trend as his brother, The Extra Step was able to provide support for the rising medical bills.
Matthew and Johnson
Prescott was diagnosed with Leukemia at a young age and immediately went into chemotherapy and was cancer free until he relapsed 14 months later. Prescott is now having more aggressive chemotherapy treatment and is having multiple complications this time which has evolved into longer hospital stays. The Extra Step was able to support Prescott and his mom with the accumulating hospital bills.
Luis is a 2 week old baby that went in on his second open heart surgery at just 16 days old. Luis's family was from out of town and taking time off work, the dad driving back in forth every few days shuffling between being with Luis and his wife and being at work. The family was experiencing unusual financial hardship after so many hours taken off of work. The Extra Step provided support for the racking up medical bills.
Lupita is a 14 year old young lady who was born with Downs Syndrome. In September of 2011 Lupita was diagnosed with leukemia and finished her treatment in December of 2013. Unfortunately Lupita's leukemia has returned and she is now starting her chemotherapy treatment all over again and will have many extended admissions to the hospital. This has been devastating for her family. Lupita's mom hasn't been able to work due to being with her in the hospital and had an upcoming electricity bill and 3 other children at home. The Extra Step was able to accommodate Lupita's family with their upcoming electric bill and food for the family.
Arantxa is a two month old little girl who has been diagnosed with a congenital heart defect. She underwent major heart surgery within a few weeks of life and had to return to the operating room about a month afterwards due to further complications. Arantxa's father works full-time while her mother remains at Arantxa's bedside throughout the day. She has three older siblings that the grandmother is helping care for during Arantxa's hospitalization. Arantxa has remained in the hospital longer than the family anticipated. After finding out about the second surgery, her mother verbalized the family's financial hardship and need for assistance. At this point the Extra Step came in to provide financial support with the surgery, which left the mother in tears as she expressed repeated and extensive gratitude.
Below are short stories of some of the children that have been apart of our journey thanks in part to the generous support of our donors. Due to family privacy concerns, some stories are more detailed than others, including the addition of their child's picture. We respect all decisions the family makes and encourage them to pursue the best interest of their children.
Francisco is an oncology patient at Children's Health and was one of the first patients. With school starting up for Francisco's brothers, his mother was concerned with the boys not having enough clothing to get them through the year, so us at The Extra Step went and brought the two brothers multiple outfits for the upcoming school year (they are big fans of Marvel characters so we made sure to spend extra time searching for character specific clothing). Lack of food in the house was also an immediate focus for the family so we brought the mother a gift card to her local grocery store so that there would be a sufficient amount of food for the weeks ahead. At the Extra Step we realize that life for the siblings and parents is stressful as well, so we look to help them out whenever we get the opportunity.
Jon is 2 years old and has Hypoplastic left heart syndrome (half a heart) and recently had his 3rd open heart surgery. Jon's father is enlisted in the army and was deployed in Afghanistan for over 3 1/2 years which left Jon's mother having to take care of Jon and his two sisters. The family has been experiencing financial strain and were unable to pay for medical co-pays. The Extra Step worked with the family and made these payments.
Trevor and his family were unable to pay for their water bill due to co-pays for his prescriptions being a necessary expense. Their water was shut off so we made "The Extra Step" to turn their water back on. Trevor is a liver transplant patient who needs many medications daily. It is very important for any transplant child to have a clean environment due to their increased risk of infection.
Brian has a history of end-stage liver disease and underwent a liver transplant when he was only one year old. He has required a great deal of medical intervention since that time requiring regular follow up appointments, lab draws and hospital admissions. Brian's family has experience financial strain as a result of their out-of-pocket medical expenses and their associated costs. On top of everything else, Brian's parents were involved in a car accident resulting in them falling behind on their rental payments, The Extra Step was able to assist this family by helping pay for their next months rent.
Cameron was originally diagnosed with Pre-Cursor B Cell Acute Lymphoblastic Leukemia in November of 2005 and underwent chemotherapy for 3 and 1/2 years. In 2009 he was diagnosed with testicular cancer and has undergone 3 testicular surgeries as well as chemotherapy. Cameron is only 10 years old and has already had Steven Johnson's Syndrome (SJS) 15 times as well as epilepsy, a neurogenic bladder, neuropathy of all appendages, and a swollen pancreas. Cameron still has to attend the hospital regularly (which is around 100 miles away) and his mother's car was unable to pass inspection with her current tires. The Extra Step was able to purchase tires for her car so she could continue to travel to the necessary hospital appointments.
Niandria is a 5 month-old girl with complex congenital heart disease. Her family traveled to Dallas for her open heart surgery, which was rescheduled on multiple occasions and delayed after her transfer to Dallas. Niandria has been in and out of hospitals for her entire life which has caused financial hardships on her family as her mom has not been able to return to work and Dad has only been able to work intermittently due to Niandria's medical needs and the changes in her surgical plan. The Extra Step assisted the family in paying for their rent while Niandria was in the hospital.
Destiny is a post kidney transplant patient who received a kidney from her father over the summer of 2015. She had been able to do well post transplant, until recently, as she is currently admitted to the hospital. The Extra Step Foundation was able to help out her family by contributing money for the expected rise in travel expenses so that they could make the long 10+ hour drive to see their daughter! Destiny's family travels from El Paso for her clinic appointments and both mom and dad come for the clinic appointments. Destiny and her family needed the extra assistance as their travel to and from children's hospital may increase over the next few months.
Elizabeth is a beautiful 6 month-old little girl that has never been able to go home from the hospital. Following open heart surgery, her family has gone to great efforts to be closer to their daughter, as they live hours away. Elizabeth's mom had to quit her job to be with her in her lengthy stay at the hospital. Between paying for gas, groceries, bills, school supplies, school deposits, and trying to save for Elizabeth's sister's upcoming Quincenera, the family has faced extreme financial hardship with the single income from dad that they are now forced to live on. In fact, they no longer had any funds for the celebration of this milestone as any funds they have go to necessities. The Extra Step was able to aid the family in supporting their other daughter's Quincenera.