STEPS TOGETHER

Steps Together is a volunteer Hillsborough based 501(c)(3) nonprofit organization dedicated to inspiring our community to pay their blessings forward and support families facing a medical crisis.  Steps Together was created after seeing a combined need in our community to reduce the isolation of families in crisis and the helpless feeling of those who care about them.  In 2013, Steps Together assisted nine local families and allocated more than $35,000.  In 2014, the organization allocated more than $93,000 across 21 families.  Much of what Steps Together provides goes far beyond financial assistance; it’s about awareness, prayers and love.

Meet some of the families we have helped. No matter where they are in their journey, they need our support, our prayers and our help to spread awareness about the medical diagnosis that forever altered their lives. Each family has their own webpage on our site. Please visit these pages to read their stories, join their social media outlets and show our collective support.  

Hayley 

In 2011, Hayley Filippini of Readington Township was diagnosed with a rare, inoperable, malignant brain tumor called pineoblastoma. After extensive radiation and chemotherapy treatment, several brain surgeries, as well as 5 months of in-patient hospitalizations at The Children’s Hospital of Philadelphia (CHOP), Hayley returned to school in January 2012. However, in August 2013, Hayley relapsed and required an additional year of very difficult chemotherapy as well as 3F8 immunotherapy injections at MSKCC in NYC. Due to a questionable MRI in January 2015, she was placed on additional chemo as a precaution. Her strong faith in God is helping her trust in His promises that she will beat this monster and reach all of her dreams and live a long, happy, healthy year. Hayley would appreciate your prayers.  www.steps-together.org/hayley

Billy 

In November 2012, Billy Biviano of Millstone was diagnosed with an inoperable brain tumor at the age of 14 months. Billy’s tumor is described by doctors like a spider’s web, wrapped around all the important parts of the brain. Billy completed 15 months of chemotherapy which is the limit for someone his age.  MRIs indicated the tumor was no longer growing but that it was also no longer responding to the treatment or shrinking. Due to the secondary risks and treatment restrictions due to Billy's young age, chemotherapy was stopped and his port was removed.   The Biviano family began to live their life in 3 month segments, MRI to MRI, and on absolute prayer.

An MRI in November of 2014 showed the tumor was enhanced.  An MRI in January of 2015, showed more enhancement but also growth.  The Biviano family is now at a crossroads with Billy's condition. Billy’s tumor cannot be due to the location which makes knowing the best way to treat it difficult. In February, doctors diagnosed the tumor with 95% certainty as a PMA (pilomyxoid astrocytoma), a type of brain cancer only first discovered 16 years ago. The number of cases where children have PMA are currently unknown.  

His last MRI in March showed no growth, which doctors explained that because the type of tumor is slow-growing, it could show up as no growth in an 8-week time frame. His parents have many decisions to make and there is pressure to make the right decision. Billy's parents are scared, anxious and frustrated.  They are praying that God can help point them in the right direction, one that will help Billy more than hurt him.

"We are extremely grateful for the prayers and support that Steps Together has provided Billy and our family on his journey through this illness. We could never thank them enough".    www.steps-together.org/billy

 

 

Alexander  

Alexander Monto of Manville was born on December 20, 2013 with congenital heart defects and a right clubbed foot. He received treatment for his clubbed foot and congenital heart defects at St. Peter’s University Hospital before being transferred to Children’s Hospital of Philadelphia.   Before the age of 5 months, Alexander had an NG tube put in to monitor feedings, required surgery to repair Phyloric Stenosis, underwent 2 Cardiac Catheritizations and 3 open heart surgeries to repair his Acyanotic Congential Heart Defects including Ventrical Septal Defects (VSD), Atrial Septal Defects (ASD) and a non-formed Aortic Valve. While recovering from the heart surgery Alexander was diagnosed with Necrotizing Enterocolitis (NEC) which is a gastrointestinal disease that causes infection and inflammation to the bowel. Alexander then had a Central Line places in a vein near his heart to better deliver the needed antibiotics, heart medications and IV fluids.

Even though Alexander was hospitalized for over 3 months he continued to be a happy and joyous little boy.  Always with a smile on his face, even the doctors  were taken back at how well he recovered from the numerous surgeries. 

Now that Alexander is at home with his family, he has to continue with weekly visits with occupation, physical and speech therapist, along with doctor check-ups, which all add up to significant medical costs. Alexander missed many crucial parts in his development including learning to eat which has had a dramatic effect on his weight gain. At 16 months of age, Alexander only weights 14 pounds. Alexander will continue to undergo testing as his family braces for the years of therapy that are ahead for him.  www.steps-together.org/alexander           

 

Chloe  

“Chloe Grace Viana of Bridgewater is a vibrant, sweet, and loving five year old little girl. Chloe Grace was born with Spina Bifida L1 Arnold Chiari  Malformation type II, myelomeningocele, hydrocephalus, and bi-lateral clubbed feet. Less than 24 hours old she underwent a 6 hour major neurosurgery to close her myelomeningocele and shunt her hydrocephalus. We were told by her neurosurgeon that she would never walk and be 100% wheel chair bound. After 9 days in the NICU we brought her home.

At four months old she underwent an emergency shunt revision. Over the past 5 years has had four orthopedic surgeries, 3 Achilles lengthenings, and in December 2014 a de-rotational tibial osteotomy.

Despite her prognosis and surgeries Chloe Grace has defied the odds and her diagnosis, but not without the help of our Faith, Family, Friends and organizations like Steps Together. Steps Together has helped us offset the costs of Chloe's medical care. We are able to cover copays, coinsurance, deductibles, durable medical equipment and private physical therapy costs to mention a few. Thanks to the increased financial support we have been able to provide Chloe Grace with a more intense physical therapy routine and she is walking independently with forearm crutches and even starting to take 7-8 steps without her crutches. She truly is a miracle

Beyond the financial support is the gift of support and prayers of an entire community. We can not say enough about how truly unique and special Steps Together is to our family, and there are no words to describe what all the love in this organization provides.”  www.steps-together.org/chloe

Naomi  

In December 2010 Naomi Jardine of Hillsborough was diagnosed with Acute Lymphoblastic Leukemia (ALL). Naomi’s prognosis was good, but her journey to full remission was 2 1/2 years long.  Naomi is a beautiful young lady who has demonstrated the courage, faith, strength, and wisdom of a person far beyond her age. Throughout her treatment she kept a positive attitude and always had a smile, and has become a true example of courage to everyone she knows. 

In September of 2014, after 15 months in remission, she relapsed as Leukemia cells were found in her bone marrow.  It was devastating to Naomi and her family.  However, after absorbing the initial blow of learning about the relapse, she quickly asked her doctor what needed to be done to get better. She is a fighter and has the faith that she can beat Cancer. 

Naomi will either receive a bone marrow transplant (BMT) or will continue intensive chemotherapy, both requiring extended hospital stays. In addition to extended hospital stays the BMT is performed at a facility quite a distance from home requiring Naomi's family to secure additional housing to stay with her during treatment. Either treatment path is extremely costly and demands unpaid leave from work for one of her parent’s, and therefore any support her family receives is a blessing and greatly appreciated.  www.steps-together.org/naomi

Quinn 

On August 20th, 2013, Quinn's Knapp of Martinsville was taken to the doctor by his mom after she noticed that he seemed very tired, was pale in color and seemed to be bruising easily.   The doctor took a look at him, asked some questions and said hold on while she made some phone calls.  The doctor returned and advised Kori, Quinn's mom, to have someone pick up their other kids, Caroline and Colin, and to call her husband at work and head to Morristown Memorial Hospital. 30-minutes after their arrival, they had a confirmed diagnosis of leukemia.   Treatment began immediately, they were in shock, their world came crashing down. 

“Initially we received offers of help but being a private person I pushed them away and I thought we have health insurance so we can handle this.  What I didn't realize was that yes we have health insurance but when you are going to the hospital 4 times a week those co-pays add up quickly and because I was at the hospital with Quinn my husband wasn't able to work overtime because he needed to be home for Quinn's brother and sister after school.  When I received a phone call from Courtney on behalf of Steps Together she literally sounded like an angel on the telephone line.  Immediately I felt a closeness to her and was in awe of her kindness and generous heart.  Steps Together took Quinn and my family under their wings and have been such a source of support emotionally, spiritually, and financially.  Quinn's treatment is just over three years and we are so grateful to have Steps Together stand by us as we take this journey.  To all of the supporters of Steps Together please know how much I appreciate you, because of your generosity you have made our families cancer journey a bit more bearable and we have been comforted to know that we are not alone.  Thank you!”  www.steps-together.org/quinn

Melissa 

Melissa Reina of Somerville was diagnosed with Ocular Melanoma in September of 2012.  This extremely rare cancer only affects 2,500 people in the US per year. She had her eye removed last October in effort to stop the cancer from spreading. Unfortunately, she was recently diagnosed with metastatic disease, for which there is no known cure. She now begins the fight for her life.

She is a wife, mother of Gianna, 9 and Jayden, 3. She is light, she is love; she has been incredibly positive throughout this entire process. Melissa is currently undergoing treatment at The Kimmel Cancer Center in Philadelphia where she was able to find one of the few oncologists in the world to treat Ocular Melanoma.   She undergoes and MRI every two months to monitor progress.

For her to beat cancer at all odds she has changed her lifestyle to healthy organic foods, reduced stress, and keeps moving as much as she can.  She also invests in therapies not covered by insurance.  She feels beyond blessed by the community support she has received and more than anything wants to try her best to provide a fun normal upbringing for her kids.  She wants them to remember more good times than bad.  www.steps-together.org/melissa

Lauren 

Lauren Couto of Hillsborough is the sweetest most loving girl you will ever meet. She makes the day brighter for everyone around her, and leaves a little sparkle wherever she goes. Seeing her you will never guess she suffers daily from symptoms brought on by Chiari Malformation.  This is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Sadly the only cure for Chiari is surgery.

Diagnosed in February of 2014 with Chiari 1 Malformation and Syringomyelia with a focal Syrinx at the C2 level, Lauren underwent decompression surgery of the Chiari consisting of a suboccipital craniectomy, C1 laminectomy, microsurgical intradural fenestration of any adhesions and placement of a Duepair duraplasty in June of 2014 at NYU.  She is now monitored closely and lives with the daily effects of having Chiari. 

"At the beginning it was extremely difficult to receive assistance as one thinks that you can manage without it.  We are so incredibly grateful to have the entire Steps Toghether family along side of us every step of the way.  The financial assistance is a huge part of Steps Together, but the emotional support is priceless.  We cannot imagine having to go through the hardest time of our lives without the love and support from all who make up Steps Together."   www.steps-together.org/lauren

Jackson 

In May of 2014, the day he turned 3 months, beautiful Jackson Silva of Garwood was diagnosed with a horrible disease called Spinal Muscular Atrophy (SMA).  SMA is the number one genetic killer of children under the age of two. It is an often fatal disease that destroys the nerves controlling voluntary muscle movement which affects crawling, walking, head and neck control, and even swallowing. There are 4 types of SMA. Jackson has the most severe form of SMA.

There are many physical effects of SMA that affect and diminish quality of life. There is no known cure. Outwardly little Jackson looks perfect, and he is. However, he is unable to move his little arms and legs. He has difficulty in holding his head up. He cannot reach out to touch the face of his loving parents. What should be a time of joy is instead filled with doctors, decisions and detours.

Our family believes in miracles and we are hopeful for a divine intervention. Our faith will carry us through.  www.steps-together.org/jackson

Stevie

Stephen Horvath of Branchburg, now 7,  was diagnosed with cerebral palsy and optic nerve atrophy at 10 months. He was born on September 2, 2006, 7 weeks premature and spent 8 days in the neonatal intensive care unit.

“Stevie” attends P.G. Chambers school in Cedar Knolls. He is able to take steps, but with much assistance. Stevie is using an adaptive stroller for most of his mobility. His daily therapies include working on self-feeding, communication and improvement of mobility and much of his treatment is not covered by insurance.

Although it has been difficult, his family is committed to doing everything possible to help Stevie reach his greatest potential. Most of the therapy expenses have not been covered by insurance.  Stevie uses a home based therapy based out of Canada called ABR, Applied Biomechanical Research, that is that not covered by insurance.  This therapy requires rental of an ABR machine as well as travel to Canada and Pennsylvania for training and reevaluation.  www.steps-together.org/stevie

Jacob  

The Bastida Family of Bound Brook was preparing to celebrate their 5-year old son’s victory over leukemia. Nicholas had been diagnosed with leukemia when he was only 3 months old. The family lived for 5 years with long hospital stays, numerous surgeries and doctor visits, but in the end Nicholas would be cured. They were looking forward to a celebration when they noticed that Nicholas’ 3-year old brother, Jacob, had developed lumps on his head and stomach. They rushed Jacob to the ER in September of 2014 and the results were devastating.  Jacob was diagnosed the next day with Brickett’s lymphoma. They had to hear once again your child has cancer.

He started treatment right away because the CAT scans showed his tumors growing rapidly. Jacob is currently undergoing chemotherapy treatment at St. Peters University Hospital. 

The Bastida family was still climbing out of the medical expenses of Nicholas' diagnosis so the community is rallying around them to help offset the medical costs now incurred by Jacob's treatment.  www.steps-together.org/jacobbastida

Xavier 

Xavier Ross was born in May of 2011 to a team of doctors, nurses and heart specialist at Children’s Hospital of Philadelphia (CHoP).  Eighteen weeks earlier, he was diagnosed with Hypoplastic Left Heart Syndrome (HLHS).  HLHS is a severe congenital heart defect where the left side of the heart is undeveloped and unusable.  The job of the left side of the heart is to pump oxinated blood into the aorta and then to the body.  At just 4 days old, Xavier went into the OR to have his first open heart surgery. The doctors inserted a BP shunt which allowed his heart to get blood to the body.  This shunt was only a temporary fix until he got bigger and stronger. 

In September of 2014, Xavier went into CHOP for his Fontan, his forth and often final open heart surgery to repair a Hypoplastic Left Heart. Typically with this surgery, the family prepares to be in the hospital for a week- and in some cases a month. While Xavier was recovering, something tragic happened. Something so rare that people who have been in the field for 15+ years have never even seen. Xavier's stitch from his Fontan burst and sent him into immediate cardiac arrest, internally bleeding (which led to externally bleeding) everywhere. A miracle happened that day when his surgeon was just a few feet away and was able to stitch his heart back up and save his life right there in his bed in the CICU. But there was of course damage that had already been done. Xavier's brain had already lost oxygen and his body went through such trauma.  He’s been in the hospital for 6+ months and it is projected that he will be there for 6 more in therapy.

Xavier’s parents take turns at the hospital making sure Xavier is not left alone.  Every day one of them tries to be home for a little bit to be with their daughter Elliot too. The stress of money has again taken its toll on them and simple things like gas to and from CHOP, diapers for Elliott, groceries, that are becoming a burden that is just not needed right now.  www.steps-together.org/xavier

Danny

Danny Garofalo of Middlesex is 12 years old and has Duchenne Muscular Dystrophy (DMD).  In the most simplistic terms, DMD is the most common, fatal, genetic disorder that afflicts boys in their early childhood. It is a progressive degenerative disease that slowly robs the muscles (including the heart and lungs) of their ability to function. All boys with DMD face a similarly short, bleak future that deprives them of their freedom, their independence and eventually their life by their early 20’s.

Danny should be in 7th grade but the school is providing home instruction at this point.  For reasons still baffling the DMD experts, Danny has a more aggressive decline of DMD. His heart is in failure.  Something that usually does not occur until late teens, early 20's. It is vital that we keep Danny as germ free as possible so he doesn't catch anything that will tax his heart more.  Hard enough with two brothers, harder still with a whole school of kids.

Danny's smile can light up a room and his genuine belly laugh is precious. He is sleeping and resting a lot at this point but when he is feeling well, we go to the park in Scotch Plains so he can swing on the handicap swing or take walks with his service dog KD and his baby brother Nico.  He is most comfortable in his home surrounded by loved ones piling in his room watching a movie or playing a board game. He loves giggling with his brothers Timmy and Nico.  And when he really feels good he loves walking with his buddies for a slice of pizza or watching a Rutgers football game.    His favorite football team.   He also loves playing Xbox and doing puzzles when he has the stamina to focus on them.   www.steps-together.org/danny

Amy  

Amy Thomas is a 35 year old Hillsborough single mother of a beautiful 7 year old daughter who is struggling to make ends meet after being diagnosed with breast cancer.  Amy woke up one morning and went to take a shower and saw her breast was dimpled and deformed.  She felt a huge lump and went to the doctor immediately and had a mammogram and ultrasound done.  She was told she needed a biopsy done right away. 

In July of 2014, she received that dreaded phone call from her breast surgeon that she had cancer.   Amy then made the difficult decision to not only have one breast removed but to have both breasts removed.  In September, pathology reports diagnosed her with Triple Negative Breast Cancer: a very aggressive cancer.  Amy started aggressive chemotherapy.  All she wants to do is be healthy and live long enough to raise her beautiful daughter.

Amy has always been a very positive person and has made the choice to fight and fight hard for Hailey!  www.steps-together.org/amy

Ray  

Ray Fantel of Kendall Park was born in October 2008. When Ray was 4 months of age, he went to his pediatrician for his well checkup. His family knew Ray seemed floppy and his pediatrician expressed concern with Ray’s low muscle tone and recommended seeing a neurologist.

In March of 2009 at Children’s Hospital of Philadelphia (CHOP), his family received a tentative diagnosis of Spinal Muscular Atrophy Type 1. Dr. Finkel said, “I hope it is not SMA, but it seems highly likely.” Ray’s dad googled it while they were in the office and he found out SMA is an incurable, terminal disease. Moreover, SMA is the #1 genetic killer of infants. The average life expectancy of an infant diagnosed with SMA is 2 years of age. His family was crushed. 

Now 6, Ray has asked to go places and see things. Steps Together has helped finance the van that transports Ray safely. 

“In 2014, we were lucky to share some amazing experiences. Ethan and Ray saw Cirque du Soleil for the first time. Ray attended his first New York Yankees baseball game. We took our first family vacation in almost 3 years; we went to Florida and all of us swam with the dolphins. It was amazing!! In many respects we are very blessed; we have learned to be thankful for what we have.”  www.steps-together.org/ray

Charlotte  

Charlotte Downey of Somerville was born in May of 2004 with Total Anomalous Pulmonary Veinous Return (TAPVR).  This required emergency transport to NY for open heart surgery at 12 hours old.  After surgery she was placed on Extracorporeal Membrane Oxygenation (ECMO), a procedure that uses a machine to take over the work of the lungs and the heart. It is a special way for a machine to help your child, while he or she is very sick  as it provide time for the body to rest and recover.  Charlotte sustained multiple organ damage and a stroke.  Her kidney damage was so severe that she required a transplant before the age of two.  22 of Charlotte's first 36 months were in the hospital. 16 of those months she was in critical care.  

In October of 2005, Charlotte has her second open heart surgery.   Charlotte was learning to eat by mouth, walk in a gait trainer and talk when we realized she had lost her hearing from her early trauma and meds. In June of 2011, she received a cochlear implant and was making great progress.  In February of 2012, Charlotte was diagnosed with Lymphoma.  Her cancer is transplant related and causes rapid growing malignant tumors.   Charlotte had 3 tumors in her brain.  The largest tumor was surgically removed and the others responded well to several rounds of chemotherapy.  Charlotte is now in remission. 

It's hard to even understand what the past 10 years has been like for their family.  Charlotte is treated at Columbia / NY Presbyterian which alone can add up to $50 per day in just tolls, parking and fuel.  Their family’s credit has been ruined by the medical bills that they have been unable to keep up with.  This impacts everything including their ability to purchase a wheelchair accessible van which they very much need.  Assistance provided by Steps Together will go towards a handicap van that her family so desperately needs.  www.steps-together.org/charlotte

Brandon & Brianna 

David and Erica Williams live in Middlesex, NJ and have two beautiful and energetic children. Brandon is six and Brianna is three. Their lives were unexpectedly changed when both Brandon and Brianna were diagnosed with a life-threatening blood disorder called Fanconi anemia. It’s a rare disease that affects only 1 in 160,000 people. Brandon's bone marrow is failing and will undergo a bone marrow transplant this summer. Brianna isn't symptomatic but doctors predict she will experience bone marrow failure within the next few years.

Due to the rareness of this disorder, there are only two centers in the country that specialize in treatment of Fanconi anemia. The Williams’ have chosen The Fanconi Comprehensive Care Center at Cincinnati's Children's Hospital to manage the children’s care. Erica has not been able to seek employment because the kids’ medical appointments, insurance claims, and research consume all of her time. David provides the only source of income.

Furthermore, their situation is not short-term. There is no cure for Fanconi anemia, even after transplant, therefore Brandon and Brianna will require proper and specialized healthcare for the rest of their lives. In 2014, David and Erica paid approximately $19,000 in out-of-pocket healthcare costs for the family.

Imagine weeks of diagnostic testing, and repeatedly hearing “bone marrow.” What does that sound like to a first grade boy? Bow and arrow. It's the only thing that makes sense in his superhero obsessed world. One day Brandon asked, “Mommy, what’s wrong with my bow and arrow?” Since then, the parents affectionately coined their children bow and arrow babies.

Funds are being raised in preparation for the enormous medical, travel and lodging expenses anticipated with each transplant.  These funds will be used only to cover medical expenses, travel/lodging expenses and research.  www.steps-together.org/bowandarrowbabies

 Jaxson  

 Jaxson was born to Mindy and Shawn Sabino on 12/29/2014, 5 weeks after Mindy’s water broke at just 29 weeks. Jaxson was in the NICU for 3 weeks. In those 3 weeks he had to maintain his body temperature and feed from the bottle which he did successfully. On January 21st Jaxson came home for about one month. During that month everything seemed perfectly fine with Jaxson.  Growing, smiling, playing, just being a healthy baby.

Then on February 26th Mindy was feeding Jaxson when he began to throw up. Soon after that Jaxson stopped breathing and turned Blue. Mindy was on the phone with Shawn at the time and he quickly hung up and called 911. Mindy began CPR on Jaxson and was able to resuscitate him. Moments later he stopped breathing again right as the police officer came into the house. Officer Raymond Pilch resuscitated Jaxson for a second time. Jaxson was then rushed to St. Peters University Hospital in New Brunswick, NJ.

At the hospital Jaxson had multiple episodes of desaturations and apnea. After multiple failed attempts at intubation, an ENT was consulted and preformed an emergency tracheostomy that night.  His parents were terrified as they were told that Jaxson may not survive the surgery. The next day Jaxson was placed on an E.E.G. monitor where initial results showed severely decreased voltage. Currently Jaxson is on 4 different anti-seizure medications and waiting on the results of additional genetic testing.

While at Children’s Specialized Hospital his family is getting education about caring for Jaxson with his tracheostomy and monitoring him for seizure activity. His other goals are to gain weight, grow, and maintain nutrition. Jaxson is scheduled to come home May 16th 2015. That date could change.  “Thank you from the bottom of our hearts for anything that you can do for us.“  www.steps-together.org/jaxson

Matt  

Matthew Hollan is an 18 year of high school senior from Piscataway. He was diagnosed in January 2015 with a very rare NUT I Carcinoma. He is the only known person in NJ with this cancer and there are less than 50 cases nationwide. There currently is no protocol for this cancer and very little is known about it. Matt bravely finished 6 weeks of radiation and many rounds of chemo to shrink the tumor. April 8th Matt had a massive surgery at CHOP to remove his shoulder blade, muscles, reconstruct his upper back and remove his tumor. His chemo resumes soon and he and his family anxiously wait for pathology of his tumor to see if his treatment is working.

Matt loves to fish with his dad. He uses a pole called an ugly stick! He is a sensitive young man who loves his friends. He enjoys doing science projects and currently is working on how to grow crystals. He is due to walk on June 18th at graduation.  www.steps-together.org/matt

 

 

We also dedicate tonight to those who are always with us. It is with the heaviest of hearts that we remember Leslie Ramirez, Daniel Nols, Jacob Grecco, Brooke Healey, Basil Guirguis & Laurie Parlin.