Here in the U.S., many young professionals’ and new parents’ five-year plans include goals like “pay off car,” “save down payment on house,” and “take trip to Hawai’i.” Imagine if we collectively readjusted our focus so our five-year plans sounded more like “make a positive difference for others” and “improve access to quality health care for children around the world.” Really. Imagine that. Take a moment. We’ll wait for you to return before continuing.
Back? Great. Check this out.
Mandee and Cam didn’t wait around for the rest of us to get on board with this imagined collective shift of attention and resources. After a humanitarian mission to Guatemala in 2010 during which Cam aided children who were dealing with such dental pain, swelling, and oral infection that they could not eat, play, or enjoy life, he and his wife Mandee decided to take matters into their own hands. They set in motion a plan to move their entire family to rural Guatemala for a year to provide free dental care to the children living there.
Photos care of Mandee Quayle
Knowing a second (and third and fourth) language - as well as having exposure to various cultural heritages - can make us feel more connected to others and provide us with expansive and enriching lives. Sometimes, in our huge United States of America, we can feel insulated and be lulled into believing that knowing English alone is sufficient for international communication; we can go decades without ever applying for a passport; and we can forget that the very fiber of our nation has been created through the intermingling of a multitude of languages and cultures.
At times, even parents here who speak multiple languages and who may themselves come from countries outside the U.S. can struggle to adequately instill in their own children the value of being multilingual and recognizing the strengths of multiple heritages. Schools like The Seattle Area German American School (SAGA) take the pressure off parents in this regard - they make it easy for parents to provide linguistic and cultural exposure and enrichment for their children. SAGA’s community in particular brings families together through a shared appreciation for education and the German language.
Photos care of Anjanette Gonzales
When Tammy’s now-five-year-old son Hudson was two years old, he became the 38th person in the world to be diagnosed with a very rare genetic condition called GAND (GATAD2B Associated Neurodevelopmental Disorder). It was May of 2016, and up to that point doctors had been at a loss to explain what was causing Hudson’s developmental delays and persistent respiratory illness. If not for the availability of whole genome sequencing, Hudson might still be receiving therapies to help with his low muscle tone without his parents or therapists knowing precisely why he was not meeting the typical developmental milestones.
GAND severely affects speech, and most people who have it are also diagnosed with apraxia (a disorder of the nervous system that makes it difficult for people who have it to perform purposeful movements, but not due to a lack of understanding or paralysis). GAND can also affect cognition, along with fine and gross motor skills. In other words, a diagnosis of GAND is a world-rocking, completely-life-altering event.
Photos care of Tammy Ruh
During a neighborhood meeting last year, Victoria heard someone mention that a local non-profit called Start-Up Kids' Club sought volunteers to teach entrepreneurship to children in the Austin area. Thinking about how her husband Shawn’s entrepreneurship had benefited their family, and pondering how beneficial learning entrepreneurial skills at a young age might be, Victoria arranged to meet with Start-Up Kids' Club’s founder Amber Waken. Well, that was it. After meeting with Amber, Victoria and Shawn were hooked and decided they wanted to help in any way they could.
Photos care of Victoria Waite
Tina and Jason’s daughter Violet was only 21 months old when she got an E. coli infection, which developed into something called Hemolytic Uremic Syndrome and shut down Violet’s kidneys, causing her to have strokes. “Overnight, our lives changed,” Tina shares. Today, five-year-old Violet continues to suffer from chronic kidney disease (CKD) and will one day during her childhood need a kidney transplant.
Photos care of Tina Walde
https://www.cmtausa.org/The Internet can be a sort of Alice-in-Wonderland kind of space. Beautiful wonders followed or superseded by sheer horrors. For example, when we notice that we or our loved ones are experiencing certain symptoms, we can research them online and find links to all sorts of pages, but discerning whether the information provided on those pages is reliable or unreliable is another story. It takes a special kind of Internet literacy and a bit of luck to know which information is accurate and steeped in authentic evidence and which is… well… fake. For Tau and Eoin, as for many other parents of children who receive confusing and sometimes frightening medical diagnoses, the Internet turned out to be the tool that connected them with their greatest source of education and support
Photos care of Tau O'Sullivan
After bursting on the scene at only 26 weeks, Burke had Stage 3 Bilateral IVH (brain bleeds) which resulted in a cerebral palsy diagnosis at about 12 months of age. When he was 18 months old, his mom Melissa knew she wanted him to start hippotherapy, and TherAplay was the only group in their city that would work with kids as young as Burke. Melissa and Burke have since had such remarkably positive experiences with their occupational and physical therapist teams that they decided to become PLAE-it-forward ambassadors in support of TherAplay.
Photos care of Melissa French
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