Healthcare for Children
Children's healthcare and support for those who share our experiences
The CLOVES Syndrome Community provide family support and research funding of a very rare disease that our friend, Ellena, lives with every day - with a smile on her face. Since 2016, Ellena holds a Loaves for CLOVES local fundraiser every year. Ellena’s mom and staff member, Robynn, with board member, Lindsey, attended the 2019 biannual CLOVES Family Conference in Boston have continued support virtually. In 2020, Ellena, was selected among dozens of nominees to be a Children’s Hospital Colorado Patient Ambassador and her story “Ellena Faces Her Rare Disease with Strength and a Sense of Humor” was shared by the Children’s Hospital Colorado Foundation. CLOVES is classified under PROS, a wide-ranging spectrum of disorders caused by a mutation in the PIK3CA gene. Recently, Ellena was featured in a PBS Medical Stories documentary. We continue to be in awe of Ellena and her family’s advocacy efforts!
Roundup River Ranch (RRR) offers old-fashioned, pure fun camp experiences for children with life-altering diagnoses. At a beautiful Colorado ranch and through year-round activities, campers and families can enjoy the most extraordinarily ordinary joys of childhood. For three years, Ellena has attended camp. Most recently, Roundup River Ranch featured Ellena’s experience.
Above - Four-year-old Clare on a Wall of Hope. Right - Ten-year-old Clare on the soccer field. Hope prevailed!
Saint Joseph Hospital Foundation supports the St. Joe's NICU, where board member Lindsey's daughter, Clare, spent the first two weeks of her life. In 2019, we created the Diane Holten Scholarship Fund for NICU Education so that others can benefit from the empowerment the nursing team, especially Diane Holten, provided us. In 2017, the NICU nurses unveiled the Wall of Hope, highlighting NICU survivors and their stories over the decades, including Clare’s. Now, as parents and loved ones walk the long hallway to care for their baby, they will find pictures of inspiration and stories of hope.
Newborns in Need provide every family delivering at Denver Health a “Warm Welcome Bag.” Our dear family friend, Tina Burke, led a bag-stuffing gathering every year and now we honor her memory by coordinating donations of baby blankets and baby hats crafted by various knitting groups.