I am Sofia and I started this nonprofit at 13 when I was genetically diagnosed with a chronic rare connective tissue disorder called Ehlers Danlos Syndrome. I have been helping kids battle illnesses for almost 6 years now throughout all of Miami Dade County. All of the projects at Sofia's Helping Hand are geared to make a child dealing with medical or mental struggles feel supported, heard, and a part of a community. I have worked closely with pediatric specialties, children's hospitals, infusion centers, schools in Miami Dade County, therapy centers and other nonprofit organizations to supply support, awareness, tools, and medical advocacy to youth and their families. Sofia's Helping Hand has supported children with rare diseases, autoimmune disorders, cancers, sensory needs, and many other diagnoses. Our projects have supported many children in all parts of Miami both directly and through partnerships with other local nonprofits like Sofia's Hope, Whispering Manes Therapeutic Riding Center, Miami Dade Schools, Nicklaus Children's Hospital, Joe DiMaggio Children's Hospital, and The Marfan Foundation.
Currently we are launching a series of projects in honor of Lucas Osuna, a young polo athlete, from Belen, that lost his life during a polo match. Lucas had an undiagnosed life-threatening connective tissue disorder called Loey Dietz Syndrome. These projects will aim to spread awareness, education, and support to prevent life threatening connective tissue disorder emergencies from occurring. This will be done by adding materials to school sports packages, interactive talks will be held at high schools throughout Miami-Dade involving athletes, athletic trainers, and coaches for awareness and education on how to handle these emergencies. Currently under this project we have launched the "Lucas Cardiac Surgery Bags" that have been handed out to local pediatric cardiac surgeons. These bags are intended to help kids after they undergo heart surgery. All bags include a heart stuffie that is weighted, lavender scented, can be cooled/heated in order to give relief from surgery stress and pain.
I promise, I will do my best to make sure that a child going through tough medical times does not feel like they are going through these times alone. I started this non-profit working with other kids that share some of my diagnosis. As my charity has grown my range of children I help has also expanded. I am developing support groups, creating care packages (to be given at doctor office, when diagnosed with disorders), helping supply medical equipment to deserving children, sensory bags for childhood anxiety and sensory needs, support packages for hospitalized children, infusion center gift bags, funding for connective tissue disorder research, and first responder emergency awareness for life threatening connective tissue disorder situations. I will continue to expand the organization to help children get through some of the most difficult times of their lives as they cope with complicated medical challenges.
Organization name
Sofias Helping Hand Corp
Tax id (EIN)
85-3446927
Mission Category
Community Care
Program Site Locations
All of Miami-Dade County
Annual Operating Budget
Less than $25,000
Primary Population Served
Youth & Children
Address
9321 SW 151ST AVE