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​Caregiving a CHILD living WITH A CHRONIC ILLNESS is Hard -
​Getting Support While Doing So is Essential

Both my daughters live with chronic, complex, and rare diseases. They are part of the 11-million children in the United States who live with chronic, and often painful and disabling, health conditions.  The experience of living with a chronic illness often results in stress and trauma that put the entire family at risk for poor quality of life, diminished mental and physical well-being, and social isolation
When my first daughter got really sick - I kept looking for the "What to Expect When... "  book or web resource for parenting and caring for a chronically ill child.  I wanted to know how help my children and family navigate life-changing illnesses. I also wanted resources that addressed the specific needs and stressors facing me as a caregiver of children living with chronic illness. I found very little.

addressing the need

For each child living with that illness there is a web of caregivers, parents, providers, family members, and friends caring for those children and impacted by their chronic illness. Few resources exist to support these caregivers. The well documented disparities in health care impact not just the children who are ill but also their caregivers as well. Caregiver wellness, health literacy, and navigation skills play a critical role in the health outcomes of children who are chronically ill.
"IT IS SO HARD TO EXPLAIN HOW REAL THE STRUGGLE IS UNTIL YOU SEE YOUR CHILD GO THROUGH DIFFICULT TIMES... YOU ARE DEFINITELY EDUCATING THE PARENTS AROUND THE WORLD HOW TO GO ABOUT GETTING THESE CHILDREN THE HELP THEY DESERVE. WE LOVE YOU FOR THAT."

EDUCATING TO EMPOWER

 Kids and Caregivers is project of the 501(c(3- non-profit Commonweal.
You can read more about my family in this Today's Parent magazine article

PARTNERING FOR CHANGE -

Kids & Caregivers is partnering with Communitas Health
to provide - Online tools, information, support, retreats, and resources for kids & caregivers - and the people who love and care about them. 
Video from the Communitas Health Retreat - Summer 2018.  

WELCOME TO KIDS & CAREGIVERS - 
wellness is possible - even when a cure is not.

 MY VERSION OF "WHAT TO EXPECT... WHEN THE UNEXPECTED HAPPENS- & YOUR KID GETS SERIOUSLY AND CHRONICALLY ILL...

"YOU HAVE BEEN A HUGE MENTOR THROUGH THIS JOURNEY WITH ME AND YOU KNOW HOW IT CAN SUCK THE LIFE OUT OF YOU WHEN YOU FIGHT SO HARD AND FEEL LIKE YOU ARE GETTING NO WHERE. I WILL NEVER FORGOT THE WORDS YOU TOLD ME. “STAY STRONG AND NEVER GIVE UP, WE AS PARENTS NEED TO ADVOCATE FOR OUR CHILDREN”. I COULDN’T OF DONE THIS WITHOUT YOU."

Let us connect you with resources that can offer help and support 

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Caregiver meet-up at UCSF Mission Bay - Finding wellness between kid medical appointments.

YOU DON'T HAVE DO THIS ALONE - 


Learn how other caregivers have improved their own sense of well being, found connection with others, while balancing the developmental needs and milestones of a childhood and family life impacted by illness and the rigors of the medical and healthcare realities that  impact everything from breakfast to bedtime.  Basically how to become a self care expert while gaining expertise as a "mom-ologist" 

KIDS and Caregivers founder wins the 2019 national Institute for Health's Rare disease awareness Challenge with
​"Unicorns are rare - rare diseases are not!!"

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Accepting 1st place at the NIH in February 2019 - on Rare Disease Day.

 There is an adage "there are no sick kids,
there are entire families living with chronic illness". 

Caregivers

Resources, information, and support for you as a caregiver

kids

Information and materials to help you help your child

resources

Toolkits, information, and resources for navigation and advocacy
We offer resources for families, caregivers, and providers regardless of insurance status or ability to pay. Our goal is to share and vertically integrate best and holistic practices throughout the healthcare delivery system and communities of care to improve outcomes for all stakeholders.
nancynetherland@gmail.com