Meet John Hudson

Meet John Hudson

It isn’t uncommon for young boys to spend a long time in the bath, but in the case of John Hudson (JH to his family and friends) the reasoning is not because of wanting to play with toy boats or make bubble beards. JH’s bathing sessions take about two hours at a time out of necessity. Since birth, JH has suffered from epidermolysys bullosa (EB). This rare skin condition, caused by lack of the protein collagen-VII, causes the skin to be incredibly fragile resulting in tears and blisters.

These painful skin abrasions make mobility incredibly difficult and painful for JH. He is bandaged from head to toe in order to keep the open wounds free from bacteria. The regular bathing sessions (administered by nurses) consist of soaking in bleach mixtures to prevent infection, draining of blisters, and continuous redressing of bandages.

Because of his mobility issues, JH has recently received a service dog (Dash) to assist with certain activities. However, as conditions have worsened, JH has missed a great deal of schooling and parents Faye and John have had to take off much time from their work schedules.

Recently, JH has begun a gene therapy trial at Stanford University (a cross country journey for the New York family). This process could hopefully spell a great change in JH’s condition to relieve much of the pain he deals with on a regular basis. Currently, there is no cure for EB.

Until then, the biggest need for the family is a renovated bathroom. This will be a much larger facility with space for all of his nursing supplies and a specialized tub. Most importantly, the room will be on the first floor of the house making it easier for JH to get to the room.

JH remains an optimistic teen. He loves hockey and hopes to chronicle his upcoming therapy sessions in a Vlog he is creating. We’re pretty sure he will have LOTS of followers!

Your donation can help us share a bit of happiness, hope, and comfort in the lives of John Hudson and families like his. Please consider a donation to Five Fathers Children’s Charity.

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Meet Michael

Meet Michael

Like most little brothers, Michael (aged 10) looks up to his big brother. Bobby (only two years Michael’s senior) realizes, however, that Michael’s adulation is a bit different than that of other little brothers. At the age of 4 1/2, Michael looked to be as athletic as his brother. However, he often complained to parents Rob and Theresa about pain in his legs. What seemed to be nothing of great consequence at first, a regular doctor’s visit combined with blood tests confirmed something much more serious – Duchenne Muscular Dystrophy.

This disease (affecting 1 in 3500 boys worldwide) is the leading fatal genetic childhood disease. Devastated by the news, Theresa (pregnant at the time) worried that her unborn child may also be a carrier of the disease. Fortunately, that was not the case. Michael’s new sister Victoria was born in good health.

While Michael has been able to attend school, his regiment requires a lot of help on the part of his parents including regular stretching, electrotherapy, aqua therapy, and more. The parents began the charity Michael’s Cause in order to help raise awareness about Duchenne Muscular Dystrophy and funds for the research cause.

Michael’s mobility remains intact for now, although a scooter is used on longer trips. Steps are proving to be too difficult for Michael to climb, and plans are in place to renovate the family home to add a first floor bedroom, bathroom, and elevator. Dad Rob (a sergeant in the NYPD) has received assistance from Staten Island (NY) Building Foundation to make the necessary renovations, but costs still remain high.

Your donation can help us share a bit of happiness, hope, and comfort in the lives of Michael and families like his. Please consider a donation to Five Fathers Children’s Charity.

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Meet Maggie

Meet Maggie

Like any other 8-year-old, Maggie is looking forward to summer – playing soccer, cheerleading, and fun in the sun. However, part of Maggie’s summer will be interrupted for tri-monthly cancer scans.

Maggie’s parents have been dealing with their daughter’s health issues since she was very young. Before her second year of life, Maggie was diagnosed with retinoblastoma. After the cancer was operated on, it was discovered some months later that it had spread into her bone marrow. Nine rounds of chemotherapy, radiation, and multiple hospital stays over the years seemed to put Maggie in the clear. In October of 2015, however, future tests took place and another cancer was discovered – this time in her bladder.

Aveolar Soft-Parts Sarcoma is one of the rarest forms of cancer. Only one other person besides Maggie has been diagnosed. Due to its rare nature, there is no treatment or cure. Radiation and chemotherapy do not help. Today, Maggie has to be scanned every three months. Any sign of cancer must be operated on immediately. This past December, a successful removal was made.

During these times, Maggie is forced to miss school for multiple days at a time. This will be the case throughout Maggie’s academic career. Still, Maggie remains positive playing soccer, running track, and cheerleading. Her three siblings (Michael, Mary Kate, and Matthew) are supportive of their sister and her belief that she will “kick cancer’s butt.”

Mom Mary Beth stopped working after Maggie’s initial diagnosis, and Dad Mike has had to find multiple ways to make ends meet. A NYC firefighter lieutenant, Dad has taken on multiple side jobs to help pay for the increasing hospital bills. As the majority of Maggie’s testing facilities are out of her insurance’s network, there remain many out-of-pocket expenses.

Your donation can help us share a bit of happiness, hope, and comfort in the lives of Maggie and families like hers. Please consider a donation to Five Fathers Children’s Charity.

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Meet Gabby

Meet Gabby

Being a princess is something many little girls aspire to. However, with Gabby, it is a Cinderella story much different than your typical tale.

At only 10 weeks old, Gabby was diagnosed with spinal muscular atrophy, a disease that claims the lives of 90% of affected children before the age of 1. Gabby’s mom, Suzanne, was able to acquire from hospitals and doctors numerous machines that would allow Gabby the ability to breathe. She had also lost the ability to swallow and needed a feeding tube to receive nutrition. She had over 10 long-term hospital visits during her first year alone.

Today, Gabby is 8. While this has certainly exceeded doctors’ expectations, she is confined to a wheelchair as she cannot move or support her head. She is unable to speak, utilizing eye typing software to communicate. She requires a life support ventilator at all times as well as other machines that measure her oxygen levels, trachea, and heart rate. This constant care requires 24-hour nursing, although a nurse is not always available to give Gabby the care she needs.

Suzanne needed to quit her job as a teacher in order to care for Gabby when nurses were unavailable. While mom is needed for care, the lack of income has become very trying on the family (which includes older daughter Madison, aged 9). A single mom, Suzanne is left to keep the family afloat emotionally and financially.

Recently, the family was able to acquire a van to allow Gabby to take outings – something she truly enjoys. Despite her physical handicaps, Gabby’s mind is 100% intact. She enjoys reading, horses, and having her hair and nails done – anything to be a princess. In fact, “Princess” is the moniker that her schoolmates gave her. Yes, Gabby attends school two times a day via Skype. Her classmates love her. She returns that affection serving as her class’s “birthday club” president.

With a great support system, this favorite daughter of Monroe, NY has the care and love she needs. However, even Cinderella needed a hand from her fairy godmother. Gabby’s needs far exceed that of a pretty dress and a ride to the ball. Help us give Gabby and her family the fairy tale ending they deserve.

Your donation can help us share a bit of happiness, hope, and comfort in the lives of Gabby and families like hers. Please consider a donation to Five Fathers Children’s Charity.

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Meet Harry

Meet Harry

Sometimes moms know things – especially when it comes to their children. This was certainly the case for Gloria when it came to her son Harry. When Harry was around eight months old – an age when many kids are anxious to start moving around – he seriously disliked tummy time. Instead, it caused him pain. Gloria and her husband Josh watched as Harry did not hit many growth and movement milestones. Doctor visits were inconclusive, and the parents were told that all children move at their own rates of speed.

However, the parents were not convinced. It took some time, but this past year Harry was diagnosed with muscular dystrophy – more specifically Emery-Dreifuss. This degenerative disease, while not as quickly progressing as some forms of MD, has no treatment options. Today, at 3 years old, Harry (known as the Mayor by his nurses and teachers due to his outgoing personality) is anxious to run around with his friends, but remains timid due to severe fall risks. Any fall could lead to serious injury.

With Harry’s mobility hampered, the family has looked to other options to help with his independence. This will hopefully come in the form of a service dog trained especially to fit Harry’s needs. The family has started the application process, but the costs will be over $23,000 – an expense not covered by insurance. Josh, a computer engineer, and Gloria, a nurse, are hoping that this dog (which will not arrive for another two years) will help “the mayor” be as independent as he can be.

Your donation can help us share a bit of happiness, hope, and comfort in the lives of Harry and families like his. Please consider a donation to Five Fathers Children’s Charity.

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Meet Julia

Meet Julia

As a parent, there is nothing quite like watching your child be successful. For parents Josephine and Enrico, this was a regular occurrence when dealing with their daughter Julia. One of four children, this vibrant 12-year-old excelled at all facets of her life whether it was in her school, her church, or the playing field. Earlier this year, however, life took an abrupt change.

What began as abdominal pain on a regular spring day turned into a summer full of visits to emergency rooms, doctors, and specialists of every kind with the same results – an undiagnosed condition. Some medical professional even suggested that the fevers, back and neck pain, rashes, hair loss, decreased mental status, twitching, and slurred speech were conditions that were “all in her head.”

Today, Julia is in a wheelchair – all sensation in her legs lost – due to what has been diagnosed as a combination of Lyme’s disease and Guillain-Barre syndrome. However, due to the rarity of the condition, her family’s insurance will not cover most of the necessary treatment and physical therapy – treatments such as daily medicines costing around $250 to $400 and surgeries costing between $5,000 to $8,000. These costs are now being paid out of the family’s savings. Julia is also on various supplements to help her body tolerate the meds, detoxify her and protect her and are at a current cost of over $500.00 a month. This has also been a logistical nightmare, with a special organic, paleo diet, which is very expensive to maintain, separating Julia from her mom and siblings to relocate to a family home in Catskill, NY, and deal with all the expenses of running a second home, plus deal with an hour commute to Albany every day. They are a family of six now living on only one salary.

Father Enrico has had to leave his job as a Respiratory Therapist in order to care for his daughter, and the expenses continue to mount. In the meantime, Julia remains an upbeat pre-teen. She is unable to be at school or even be homeschooled as the strain on her brain becomes too challenging after a prolonged period of time. Still, Julia remains a presence at her school. Recently, her schoolmates gathered to form a huge J to photograph themselves in honor of their friend. Here’s a way for you to get in the J with them.

Your donation can help us share a bit of happiness, hope, and comfort in the lives of Julia and families like hers. Please consider a donation to Five Fathers Children’s Charity.

 Make a donation to Five Fathers Children’s Charity.

Meet Nicholas

Meet Nicholas

It can’t be easy to have your first open-heart surgery before you’re even one month old, but according to Nicholas’s doctors the kid “didn’t get the memo” about being upset about it.

“He is amazing,” says mom Christina about her “little miracle.” When pregnant, Christina and husband Robert learned that Nicholas had multiple congenital heart defects and would require multiple surgeries once born. This first surgery took place in January 2015, but, while successful, it took its toll on the little patient. He went into cardiac arrest and had to be placed on life support.

Today, Nicholas can be seen following his mom around with his walker smiling like any happy baby would. Christina, who is currently on leave without pay, needs to monitor her son’s weight and oxygen on a daily basis and takes him to regular cardiologist visits. Unfortunately, not every specialist accepts the family’s insurance, and the hospital bills are adding up.

A second major surgery is coming soon. As Nicholas has grown, his central shunt placement has pushed its way out of his heart. Christina and Robert are hopeful that their son will continue to improve. In the meantime, Nicholas keeps smiling ignoring “the memo” that he should be any other way.

Your donation can help us share a bit of happiness, hope, and comfort in the lives of Nicholas and families like his. Please consider a donation to Five Fathers Children’s Charity.

 Make a donation to Five Fathers Children’s Charity.

Meet Summer

Meet Summer

There is nothing like being a parent for the first time, except maybe being a grandparent for the first time. For Summer’s family, it was firsts all around – first time parents (Bob and Gina) and grandparents on both sides. Summer brought joy to her new family, but that great joy was coupled with sadness as well. Right before a regularly scheduled well visit, Bob noticed a protrusion in his daughter’s stomach. This led to immediate ultrasounds, CAT scans, and blood samples – all of which led to the discovery of hepatoblastoma (liver cancer).

Chemotherapy started quickly, and Summer has recently completed her second round of treatment. Despite being poked and prodded, 9-month old Summer remains a trooper – delighting nurses and doctors with her seemingly permanent smile.

Despite the excellent care Summer is receiving at NY Presbyterian Hospital, trips into the city from New Jersey are definitely taking their toll. Bob and Gina are planning to move in with family in order to avoid mortgage costs and, more importantly, receive much needed assistance in Summer’s care as they return to work.

Recently, Summer has been making the attempt to walk – always a major moment in a child’s life and a huge source of pride for parents. We want to help make sure Summer and her family experience many more moments even bigger than this one.

Your donation can help us share a bit of happiness, hope, and comfort in the lives of Summer and families like hers. Please consider a donation to Five Fathers Children’s Charity.

 Make a donation to Five Fathers Children’s Charity.

Meet Anthony

Meet Anthony

If you are a parent, you know that feeling of helplessness whenever your children are sick. You trust that your doctor will know what to do, providing guidance and wisdom that you don’t possess. However, what happens when your doctor is stumped too?

This was the dilemma facing parents Gina and Christian when their son Anthony was born. Anthony was born at 36 weeks at just over 4 pounds in weight. As time went on, Anthony struggled to gain weight and developed numerous rashes. Visits to every “ologist” imaginable commenced, and no explanations were provided. Finally, it was diagnosed as Shwachman-Diamond Syndrome (SDS), a genetic disease that affects 1 in 77,000 children. Because of this disease, Anthony’s pancreas is unable to break down fats requiring him to take enzymes every day. Every 3-4 days, Anthony receives an injection to help his bone marrow fight off infection.

Regarding infection, because Anthony’s white blood cell count is so low he is always susceptible to illness. He has been in the hospital every 2-3 weeks since August 2014 because he is always subject to infection. “There is no such thing as a little cold with Anthony,” says mom Gina. “It’s a trip to the hospital every time.” The family is unsure as to what the future holds; there is a 30% chance that Anthony will contract leukemia as he gets older.

Older brother Nicholas feels the effect of his brother and mother spending much time at various medical facilities. Recently for a school project Nicholas had to draw a picture of his family. He drew only his dad and himself. When asked where mom and Anthony were, Nicholas responded, “At the hospital.” We want Nicholas (and Anthony) to start drawing those pictures of the whole family together.

Your donation can help us share a bit of happiness, hope, and comfort in the lives of Anthony and families like his. Please consider a donation to Five Fathers Children’s Charity.

 Make a donation to Five Fathers Children’s Charity.

Meet Micah

Meet Micah

For most young people, senior year of high school is a year to make great memories. A time to relish the moment and prepare for the future. For 16-year-old Micah, however, senior year will begin with uncertainty.

Earlier this year, Micah was diagnosed with lymphoma cancer. Treatments began immediately and will continue well into the fall. Due to this necessary treatment, Micah was unable to complete his junior year and is likely to miss at least a month of his senior year. Dreams of college may also need to go on hold, and it’s not just because of the treatment.

Natives of Maui, Hawaii, Micah and his family have had to had to deal with many financial hardships. The only place Micah can receive care is in Honolulu at the Kapiolani Children’s Hospital — 30 minutes away by plane. Although doctors recommend returning home after each round of treatment, round trip flights can be up to $350 per person. Rental cars, flights, and medical bills have added up for the parents that are unable to work in order to care for Micah full-time. Insurance has declined to cover all of the treatments.

Micah wants to be home playing basketball and video games with friends, getting ready for the prom that he missed during his junior year, and making plans for college. We want him there too.

Your donation can help us share a bit of happiness, hope, and comfort in the lives of Micah and families like his. Please consider a donation to Five Fathers Children’s Charity.

 Make a donation to Five Fathers Children’s Charity.