Amid COVID 19 Crisis, Joshua Frase Foundation Leads Search Spanning Two Continents to Deliver Ventilator to Ailing Child in Ecuador
One-Year-Old With Rare Centronuclear Myopathy Diagnosis Gets Life Saving Ventilator Thanks To Dauntless Network of Families in U.S. and Europe.
May 26, 2020, 08:41 ET
PONTE VEDRA BEACH, Fla., May 26, 2020 /PRNewswire/ -- Throughout the pandemic, ventilator support has been in short supply. And for one family in Ecuador, finding a ventilator and getting it flown to the small hospital where their one-year-old son was being treated for a rare neuromuscular disorder seemed an insurmountable task.
But worlds away, two organizations on different continents used their network to not only find one, but get it donated and shipped in the nick of time – all through families connected by the same thread -- having children affected by centronuclear and myotubular myopathy disorder.
One-month-old Wilson is now stable and ready to go home in Ecuador thanks the herculean efforts of Florida-based Joshua Frase Foundation and Zusammen Stark! eV (CNM-Together Strong), an association in Germany.
"The families that played a role in giving mechanical breath to this child know all too well the priceless value it holds, especially in that fragile first year with a child diagnosed with a nueromuscular disorder. "Having been through it ourselves, we know that without it, this child would pass," said Alison Rockett Frase, founder of Joshua Frase Foundation.
Wilson, like Alison's late son Joshua for whom the foundation is named, was born with myotubular myopathy, which causes very weak muscles, the patient is unable to eat without a feeding tube and requires a ventilator to breathe.
In Ecuador, the healthcare system cannot provide a portable ventilator for parents to take their child home to live out their life. "That means that his family can either chose to keep him alive and institutionalized or bring him home to perish unless they can find a way to pay for or acquire a home ventilator on their own," explained Frase.
Desperate to bring Wilson home, his family reached out to CNM – Together Strong!, the association that helps families with centronuclear myopathies in Germany. They connected with Alison and the Joshua Frase Foundation, known for managing a medical equipment exchange program in the U.S.
"The logistical challenges from one country to the next, from customs and language barriers, to the updating of obsolete equipment were all overcome to save Wilson's life," said Frase. "This story shows that the beauty of humanity knows no boundaries and can span three continents, even when the world has been turned upside down."
For Wilson's parents, the gift was more than just a medical machine. "This was not just a gift of breath, but a gift of life in the truest sense," said Andre Carlozama and Daniel Augalsaca. "The joy and elation of now being able to bring Wilson home is immeasurable."
Both the Joshua Frase Foundation and CNM-Together Strong! in Germany are hoping to help the family with additional medical expenses, including maintenance of the ventilator and for doctor care while he is at home. For donations, please visit www.pleasedonate.org and tag "for Willson".
"Although children born with this often-fatal disorder live on borrowed time, it is essential that every family be provided the opportunity to bring their child home to spend quality time outside institutional walls," said Frase. "Every donation will mean so much for this family."
About The Joshua Frase Foundation
(JFF) is a 501C3 non-profit organization that was founded in 1996; a year after Paul and Alison's son was born with an ultra rare and fatal neuromuscular disorder. Without hesitation, the foundation began funding cutting-edge research in the area of regenerative medicine, gene therapy and genetics since 1997. JFF's mission is twofold: To find a cure or treatment for centronuclear and myotubular myopathies and to support families whose lives are affected by these disorders. Not only has JFF been able to fund groundbreaking science, pioneering into a curative treatment that has the potential to transform neuromuscular research; it has also built an international community of children and their parents. The foundation's efforts have spearheaded human clinical trials for gene therapy. For more information, please visit http://www.joshuafrase.org.
About ZNM – Zusammen Stark! e.V.
(CNM – Together Strong!) is a self-help association for myotubular myopathy and other centronuclear myopathies (CNM = ZNM). We represent (as of October 2019) 159 individuals from 52 families with a CNM in Germany, the Netherlands and Austria. As a self-help organization our main goal is to connect those affected and their families and to support each other in our daily lives. This is mainly done by our yearly family conference, conference, webinars and our closed Facebook support group. We also actively invest on research to find a treatment for these conditions. For more information please visit https://www.znm-zusammenstark.org/en.
Media Contacts:
Alison Rockett Frase, Joshua Frase Foundation
904-567-3933 or [email protected]
Liz Morgan, Liz Morgan PR
904-608-3823 or [email protected]
SOURCE Joshua Frase Foundation
