Joshua Jacob (JJ) Gonzalez came to the attention of the Miami Herald Wish Book team at only 20-months old. He was born with a rare genetic disorder called X-linked myotubular myopathy that causes such severe muscle weakness that those born with the condition miss the motor-skill milestones that mark a newborn’s development.
The Miami toddler sleeps amid a plethora of medical devices near his crib just to keep him alive. A ventilator provides air through a hole in his throat so that he can breathe. A suction machine keeps his airway clear.
Hurricane Irma tore holes in the roof of the family home in Miami’s Fontainebleau neighborhood. The threat of mold could further compromise JJ’s breathing.
After reading JJ’s story in the Herald at the start of this season’s Wish Book campaign at Thanksgiving, readers responded.
Lanny and Sandi Gelfand, owners of Pioneer Roofing, donated $19,000 worth of work to replace the roof and repair water leak damage to the interior of the home. About $700 worth of gift cards were donated. The Miami Seaquarium invited JJ’s family to come visit the park early on Nochebuena before it opens to the public. Javier Gonzalez and his wife Jessica could never take their son to a tourist attraction with crowds around and risk exposing him to illness.
“We are so overwhelmed with joy and gratitude for everyone who has reached out and helped us this Christmas. All of these things mean so much because it allows us to continue to provide the best possible life for Joshua no matter how long that may be. He is a child who is more than just our son. He inspires us to be the best we can be and to appreciate even the smallest of victories,” Javier Gonzalez wrote in an email to the Herald.
“As I am writing this, I can not contain my tears, because I know that God has a plan for his life. Everyone who meets him tells me how he changes their way of thinking. He is currently doing very well and awaiting for hopefully curative results regarding the current gene replacement therapy study that has just begun in humans,” Gonzalez said.
The Gonzalez family aren’t alone in benefiting from readers’ generosity.
There’s Katherine Sanchez, 15, who was bullied in her native Cuba by classmates and even her teachers because she was born blind. She moved from her tiny, wooden family home in Morón, a central Cuban town, to Miami with her mother Triana in hopes that better schooling could help Katherine thrive.
Katherine is now earning As and Bs and is on the principal’s honor roll at G. Holmes Braddock High School in Kendall. After her story ran in November, the Marlins Foundation donated Job Access With Speech (JAWS) software — a screen reader developed for computer users whose vision loss prevents them from seeing screen content or navigating with a mouse. JAWS provides speech and Braille output.
The Miami Marlins also donated a desktop monitor and a $1,000 wish list for living essentials. Derek Jeter, retired Yankees shortstop and part owner of the Marlins, delivered the gifts in person.
Katherine also received a laptop and piano lessons from the Saul and Theresa Esman Foundation, a $4,500 Braille Note 18 device from Emilio Garcia, furnishings from Habitus Furniture, and cash and gift cards, including $100 from Jay Naiman, who is also blind.
Garrett Lisle’s story in December also touched readers. Lisle, 22, lives with cystic fibrosis, a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. He lost nearly all of his possessions and rental home on Cudjoe Key to Hurricane Irma in September.
Maria Applegate donated a portable Inogen oxygen concentrator machine valued at $3,200 to Lisle. “My mother-in-law purchased this machine a couple years ago. Unfortunately, she died last August. It would help heal my heart to know that this young man could make use of this machine,” Applegate told the Herald’s Wish Book team.
“This has been an amazing experience for Garrett and he and all of us at the University of Miami Pulmonary Department are overwhelmed by the generosity of the readers of the Miami Herald and its staff for the Wish Book,” said medical social worker Sherri Kelly, who nominated Lisle for Wish Book.
“The greatest story of this experience is when I received a call from Garrett this week. He told me he is so grateful for everything he has received and couldn’t thank us enough. He said that a family reached out to him who have a child with cystic fibrosis. They had a wonderful chat with him and after they talked, Garrett told me he has a new outlook on things and wants to revisit the conversation about a lung transplant,” Kelly said.
“Before this, Garrett had said he never wanted a transplant. All of us at UM Pulmonary thank the Miami Herald Wish Book and are grateful for everything they do each year,” Kelly said.
JJ, Katherine and Lisle are just three of many people who have been helped so far this season by Wish Book, a community effort that has been a mission of the Miami Herald for 36 years. For the 2017 campaign, the Herald has spotlighted about two dozen nominees online and in the paper with plans to continue through the holiday season.
Wish Book coordinator Roberta DiPietro said the series has collected more than $150,000 so far. The numbers are down compared to last year when Wish Book brought in $200,000 by this point and $150,000 at the same time in 2015. The devastation from Hurricane Irma through Florida and Puerto Rico is one likely contributing factor to the dip.
Still, DiPietro remains optimistic. “In-kind donations are very high as many people want to help others by getting them goods and delivering directly to agencies,” she said.
For instance, Melissa Allen, a North Miami grandmother and retired Miami-Dade Corrections officer, had temporary custody of her three grandchildren when their home erupted in flames in February. So far, she has received a like-new refrigerator and furniture. The Miami Dolphins “adopted” the family for the holidays for a festive meal and Christmas gifts for the kids.
Wish Book accepts donations year-round.
Stories like JJ’s resonate because of their snowball effect.
Karen Payne, a Miami-based writer and former Miami News metro reporter, reached out to Alison Frase at the Joshua Frase Foundation about JJ. The Frase organization, which had been working with the Gonzalez family, nominated the toddler for Wish Book.
The nonprofit foundation was founded in 1996, a year after former New York Jets defensive tackle Paul Frase and his wife Alison’s son was born with a rare and often fatal neuromuscular disorder. The foundation began funding research in the area of regenerative medicine, gene therapy and genetics to find a cure or treatment for centronuclear and myotubular myopathies, and to support families whose lives are affected by these disorders.
Payne came to know JJ through his father, Javier, a veterinary technician in Miami. “Over the years, Javier has made it his personal mission to give me extra advice about caring for my cats,” Payne explained.
JJ cannot lift or turn his head, or sit up without falling over. He can’t breathe or swallow without the help of machines to perform the work that his diaphragm, tongue and esophagus are incapable of doing on their own.
“I was amazed when Javier told me that JJ’s condition was a blessing,” Payne said in a story she wrote for the Frase foundation. “He had faith that his son’s life, whether long or short, would serve a good purpose, perhaps to help or inspire others.”
Payne faced her own struggles. Her mother in Texas fell ill, required full-time care, and died earlier this year. A few month’s later, Payne’s cat died as Hurricane Irma approached Miami.
At the same time, Javier and Jessica Gonzalez loaded JJ and their daughter Bella, 9, into a specially equipped van and fled Miami to Jacksonville — and kept driving to Georgia, Alabama and Mississippi to outrun the monster storm’s shifting track.
“On that same day, Javier still continued to help me, texting advice and support,” Payne said. “Because of Javier’s kindness — he never stopped helping me even in the midst of his own troubles — I wanted to help Javier’s family.”
So Payne reached out to Alison Frase. The Gonzalez family home was no longer safe for JJ.
“The Miami Herald did a wonderful job with this, and the family of JJ Gonzalez is blessed beyond their dreams with everything that has happened for their benefit,” Payne said. “All of these blessings have their origin in a chain of people who were willing, one by one, link by link, to do something to help others.”
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