When Lauren and Marc’s son Holden was diagnosed with it a little over two years ago she found that her sole resource for learning about her son’s condition was the Dup15q Alliance. As they left the geneticist’s office, Lauren and Marc pored over the Dup15q Alliance’s website for hours, learning everything they possibly could about Dup15q Syndrome. Lauren says, “Upon registering with the alliance, I was immediately connected with our regional rep and she was able to talk me through the diagnosis and help us understand what types of therapies and specialists Holden would benefit from.” This call let Lauren and Marc exhale. They were not alone.
Photos care of Lauren Weissberg
In circumstances like those in which Gadi’s parents found themselves after the birth of their darling boy, community often becomes more important to many of us than ever before. Gadi was born premature at 31 weeks. After spending 4.5 weeks in the NICU, he was sent home with his parents Sylvia and Aron, the doctors assuring them that everything was fine. While they were thrilled to have their baby home, Sylvia and Aron noticed that something was not quite right with his development. Gadi’s pediatrician explained that Gadi’s issues were due to being born early and told his parents everything would get easier, but that simply was not happening. Sylvia says, “After taking him for an early intervention evaluation and to several specialists, we finally got some answers.”
When their son Gadi was diagnosed with cerebral palsy (CP) at seven months old, Sylvia remembers feeling “very lost and alone. It was not easy for us to ask for or take any help, but when I finally made the call I was glad I did. Chai Lifeline made us feel like we belonged and gave us the support we needed.”
Photos care of @lifewithgadi IG
If you haven’t yet heard of Mighty Miss Maya, you may want to check the inspiration meter of your social media feeds. Her first steps have been hopping, skipping, and jumping all over the web, restoring faith in the indomitable human spirit. The fact that Maya was wearing PLAE shoes when she took those first few steps tickles us way past pink - not only do we love it when our shoes hug little feetsies taking their first steps wherever and whenever they take them, but we take pride in helping to support developing bodies as they find their strength and balance the way Maya is doing now.
Photos care of Ann Tisdale
Nicole was devastated when her son Casper was diagnosed with clubfoot in week 20 of her pregnancy. She kept telling herself, “It could be worse,” but she was simultaneously eager to get his treatment over and done with so she and her family could move on with their lives and never have to think about it again. After all, her doctors had assured her it would be an “easy fix."
Photos care of Nicole Bytnerowics
Only one year ago, in July of 2017, a conference was held for families and individuals impacted by a chromosome 17q12 disorder. Those in attendance had come from all corners of the United States and were just meeting for the first time at the conference, but they shared common goals and quickly formed a board consisting of four parents and a genetic counselor. Within six months, they received the official 501(c)3 designation from the IRS to operate as a nonprofit organization by the name 17q12 Foundation.
Photos care of Liz Fourie
When Rasha’s three-year-old son Bavi was diagnosed with Duchenne muscular dystrophy, a multi-systemic genetic disorder that causes muscular deterioration of the heart, lung, and skeleton, she had no idea where to turn for help. Rasha says nonprofit group Parent Project Muscular Dystrophy (PPMD) was her “light at the end of the tunnel.” PPMD consists of an amazing group of passionate parents who work tirelessly to alter the anticipated outcome of Duchenne, which primarily strikes male children and typically results in much shorter lifespans than most of us hope for.
Photos care of Parent Project Muscular Dystrophy
After Scott’s father passed away due to cancer and the strain on his body from chemotherapy and radiation, Scott did not know what to do. He says his father “was the type of person that even though he was in a difficult fight, he would still give the shirt off his back to the person next to him. So to honor his memory, I had to do something that would give back to people who were in the same fight he battled for years.” Scott decided to establish the nonprofit Let Me Live Foundation to help people fighting cancer manage the financial hit that comes with receiving medical treatment.
Photos care of Let Me Live Foundation
We all need a little help sometimes. The Southern Marin Mothers’ Club (SMMC), run entirely by 70+ enthusiastic mom and dad volunteers, recognizes this. The club supports its members while engaging in meaningful philanthropic work to benefit local nonprofits that support parents, children, and families. For their 2018-2019 fundraising term, SMMC formed a partnership with Novato-based Gilead House, whose mission is one all SMMC members can get behind: housing homeless single mothers and their children.
Photos care of Gilead House
When their precious 20-month-old daughter Ava was diagnosed with a rare neurogenic disorder called Angelman Syndrome (AS), parents Rachel and Cole immediately sought out any information they could find on the disorder. They quickly discovered that FAST was a leading champion for individuals with AS, seeking not only to improve quality of life but also to find an effective treatment for the disorder
Photos care of FAST
Holly and her family had just moved to Marin when their eldest child, Ellie, was 15 months old. Holly was newly pregnant with her second child and wanted to find a safe, easy place to take Ellie to play outside. She joined Pixie Park on the recommendation of a neighbor and was hooked. The lovely enclosed playground was a lifesaver because Holly didn't have to worry about Ellie running away or into the street - so much so that even when she was nine months pregnant Holly continued to feel comfortable bringing Ellie there.
Photos care of Julia Zave Photography