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RareJeans4RareGenes
February 28, 2020 @ 8:00 am - 12:00 pm
STUDENTS AT MULTIPLE SCHOOLS IN SILICON VALLEY AND MONTEREY COUNTY WILL BE PAYING TO SWAP THEIR SCHOOL UNIFORMS FOR JEANS TO HELP TREAT SERIOUSLY ILL CHILDREN
San Jose, CA (February 28, 2020) — Today, students at multiple schools in Silicon Valley and Monterey County paid $5 each in order to wear jeans instead of their school uniforms as part of “Wear Jeans for Rare Genes,” a fundraiser for the nonprofit group Coastal Kids Home Care.
Since 2005, Coastal Kids has provided more than 50,000 in-home treatments to approximately 7,500 children with rare genetic syndromes, rare congenital defects and rare childhood cancers. Currently, they are providing care to 650 medically fragile infants and children in Monterey, San Benito, Santa Clara and Santa Cruz counties.
“No one wants to spend a lot of time in a hospital, especially kids,” said Coastal Kids Executive Director Margy Mayfield. “Our nurses and therapists ensure that these seriously ill children can get the treatment they need while being safe and secure at home, surrounded by their families.”
Claire Watson is one of the children being treated by Coastal Kids. She suffers from the rare genetic disorder Mucolipidosis II (also known as I-Cell disease) and doctors did not expect her to live past her second birthday. Thanks in part to the in-home treatment provided by Coastal Kids, she will turn 12 in March.
“ I am so proud of her,” said Susi Watson, Claire’s mother. “She is resilient. She has made me compassionate and has taught me to smile and laugh a lot.”
St. John Vianney Catholic School in San Jose is one of the schools participating in “Wear Jeans for Rare Genes Day.” Principal Laura Seminatore says the students that donate are getting much more than just a day off from their uniforms.
“St. John Vianney Catholic School is honored to be partnered with this amazing organization. They are presently helping one of our past students battle a very rare disease. We are very grateful that this agency works to assist these special children,” said Seminatore.
Coastal Kids provides skilled nursing, including IV infusions, physical and occupational therapy, counseling and palliative care, as well as mental health services. Unfortunately, the demand for their services far outstrips the organization’s resources, making fundraisers such as “Wear Jeans for Rare Genes” so important.
“There is so much unmet need. The demand for our services is growing especially fast in Santa Clara County. Three years ago it was less than 20% of our caseload, now it is almost half,” said Mayfield.
Coastal Kids (www.coastalkidshomecare.org) is California’s only non-profit pediatric home health agency.