Messages Of Hope

AN INTIMATE LOOK AT CHILDREN WITH RARE DISEASES

By JOHN J. BURO

OLD BRIDGE -The concept was borne from the 1969 death of a brother who was afflicted with Tay-Sachs Disease -a rare genetic disorder that destroys nerves in the brain and spinal cord- and was furthered when a best friend gave birth to a child with Angelman Syndrome eight years ago.  Somewhere between Rafi, the brother she never got to meet, and the friend she shared many fond memories with, Karen Haberberg had a vision.

Last October, when “An Ordinary Day: Kids With Rare Genetic Conditions,” (powerHouse Books) was published, she realized that vision.  The 176-page photo essay highlights 27 unique children, ranging in age from four to 15, including Jamesy Raffone -the face of JAR of Hope’s fight against Duchenne Muscular Dystrophy.  The book has been well-received, and proceeds from all sales are siphoned back into researching possible treatments for these maladies.

In the US, a rare disease or disorder is defined as one which affects fewer than 200,000 Americans at once; more than 7,000 of these diseases (such as DMD) are known to exist and 80% of them have genetic origins.  Here, one in 10 people live with such an illness, and 30% of children with rare diseases do not live past the age of five.

“My parents were involved in the Tay-Sachs Foundation for quite some time,” said Haberberg, a New York City-based photographer.  “I’ve always wanted to support it, but couldn’t figure out where I would fit in.  I’m not much of a fundraiser -although I have since become better at it.  Then, when Ethan was diagnosed with Angelman (a neuro-genetic disorder), I realized that families who have kids with rare diseases do not have much of an outlet to tell their story”.

Her own life has provided the backdrop to tell such a saga.

While Haberberg wished to have seen and played with Rafi (“even just once”), she was tantalizingly close to being born the same way.  However, by the time of her birth, pre-natal testing (amniocentesis) was in play and, subsequently, Haberberg was one of the first 300 tested fetuses in the country.

Creating a book centered on these unfortunate children required just as much luck.  “I reached out to Global Genes,” she related, “and asked them to send out information about the project (to their clients).  Many different families contacted me, and they are what made this book.”  So many, in fact, that -during this two-year endeavor- she amassed more than 10,000 photos (shooting with both a Canon EOS 5D Mark IV digital and a Sony A7R3 full-frame mirrorless lens), which had dwindled to 103 by the final edit.

Even a seemingly huge hurdle, such as protecting a child in 21st Century America, wasn’t much of an obstacle, after all.  “I explained to the parents before scheduling the shoot what to expect and all of them were incredibly accommodating, open, and honest.”

 

Haberberg then went to work.  Not only did her subjects relent, “many of the children weren’t even aware they were being photographed; in fact, “only one child was a little self-conscious at the beginning of the shoot, but she came around.”

Still, there was a toll to pay for bringing these diseases to light.

“I often felt emotionally drained, but incredibly rewarded,” the first-time author said.  “The families shared very personal intimate details and I couldn’t help but feel their pain.  I am grateful to these families for sharing their stories and allowing me into their world — I will never forget them.’

Particularly the children -each of whom “exuded perseverance, strength, joy and sorrow at different times.”

Though each of these circumstances merit funding and the science behind it, Haberberg tried to remain optimistic when asked if any of these children will ever be cured.  “That’s a very difficult question to answer.  I don’t know if any of them will be cured, but I certainly hope and pray for better treatments, solutions and cures because these kids deserve this and so much more.”

One family of note resonated with her.

“The Raffones,” she recalled, “are a force to be reckoned with — they are absolutely unstoppable. They spend their days raising money, awareness and innovative treatments for Duchenne.  My money is on them, along with my admiration and respect. They are passionate, loving and highly motivating.”

Haberberg cited one critical stage of Jamesy’s illness.

“I will never forget their description of how devastated they were when they got his diagnosis, and how they took that pain and turned it into their mission to find a cure.  Jim has come up with several really innovative ideas for treatment, such as how a barometric chamber is helping Jamesy’s heart and how ultrasound is helping his legs.”

In retrospect, the book has had a greater impact than even she imagined.

“Initially,” Haberberg recalled, “I thought that the book would connect families who have children with rare conditions with other families -to get the word out, spread awareness, increase visibility and raise funds for treatments and cures.

“What I didn’t realize was it’s actually a book that any family can connect to.”

OLD BRIDGE -The concept was borne from the 1969 death of a brother who was afflicted with Tay-Sachs Disease -a rare genetic disorder that destroys nerves in the brain and spinal cord- and was furthered when a best friend gave birth to a child with Angelman Syndrome eight years ago.  Somewhere between Rafi, the brother she never got to meet, and the friend she shared many fond memories with, Karen Haberberg had a vision.

Last October, when “An Ordinary Day: Kids With Rare Genetic Conditions,” (powerHouse Books) was published, she realized that vision.  The 176-page photo essay highlights 27 unique children, ranging in age from four to 15, including Jamesy Raffone -the face of JAR of Hope’s fight against Duchenne Muscular Dystrophy.  The book has been well-received, and proceeds from all sales are siphoned back into researching possible treatments for these maladies.

In the US, a rare disease or disorder is defined as one which affects fewer than 200,000 Americans at once; more than 7,000 of these diseases (such as DMD) are known to exist and 80% of them have genetic origins.  Here, one in 10 people live with such an illness, and 30% of children with rare diseases do not live past the age of five.

“My parents were involved in the Tay-Sachs Foundation for quite some time,” said Haberberg, a New York City-based photographer.  “I’ve always wanted to support it, but couldn’t figure out where I would fit in.  I’m not much of a fundraiser -although I have since become better at it.  Then, when Ethan was diagnosed with Angelman (a neuro-genetic disorder), I realized that families who have kids with rare diseases do not have much of an outlet to tell their story”.

Her own life has provided the backdrop to tell such a saga.

While Haberberg wished to have seen and played with Rafi (“even just once”), she was tantalizingly close to being born the same way.  However, by the time of her birth, pre-natal testing (amniocentesis) was in play and, subsequently, Haberberg was one of the first 300 tested fetuses in the country.

Creating a book centered on these unfortunate children required just as much luck.  “I reached out to Global Genes,” she related, “and asked them to send out information about the project (to their clients).  Many different families contacted me, and they are what made this book.”  So many, in fact, that -during this two-year endeavor- she amassed more than 10,000 photos (shooting with both a Canon EOS 5D Mark IV digital and a Sony A7R3 full-frame mirrorless lens), which had dwindled to 103 by the final edit.

Even a seemingly huge hurdle, such as protecting a child in 21st Century America, wasn’t much of an obstacle, after all.  “I explained to the parents before scheduling the shoot what to expect and all of them were incredibly accommodating, open, and honest.”

 

Haberberg then went to work.  Not only did her subjects relent, “many of the children weren’t even aware they were being photographed; in fact, “only one child was a little self-conscious at the beginning of the shoot, but she came around.”

Still, there was a toll to pay for bringing these diseases to light.

“I often felt emotionally drained, but incredibly rewarded,” the first-time author said.  “The families shared very personal intimate details and I couldn’t help but feel their pain.  I am grateful to these families for sharing their stories and allowing me into their world — I will never forget them.’

Particularly the children -each of whom “exuded perseverance, strength, joy and sorrow at different times.”

Though each of these circumstances merit funding and the science behind it, Haberberg tried to remain optimistic when asked if any of these children will ever be cured.  “That’s a very difficult question to answer.  I don’t know if any of them will be cured, but I certainly hope and pray for better treatments, solutions and cures because these kids deserve this and so much more.”

One family of note resonated with her.

“The Raffones,” she recalled, “are a force to be reckoned with — they are absolutely unstoppable. They spend their days raising money, awareness and innovative treatments for Duchenne.  My money is on them, along with my admiration and respect. They are passionate, loving and highly motivating.”

Haberberg cited one critical stage of Jamesy’s illness.

“I will never forget their description of how devastated they were when they got his diagnosis, and how they took that pain and turned it into their mission to find a cure.  Jim has come up with several really innovative ideas for treatment, such as how a barometric chamber is helping Jamesy’s heart and how ultrasound is helping his legs.”

In retrospect, the book has had a greater impact than even she imagined.

“Initially,” Haberberg recalled, “I thought that the book would connect families who have children with rare conditions with other families -to get the word out, spread awareness, increase visibility and raise funds for treatments and cures.

“What I didn’t realize was it’s actually a book that any family can connect to.”

Leave a Comment

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Related Posts