Here is Riley’s heartbreaking story in the words of her mom.
“On August 5th we received a phone call that forever changed our lives. California Newborn Screen test results for our newest daughter Riley had come back abnormal. Days later our worst fears were confirmed, our precious Riley was born with SCID more commonly known as "the bubble boy" disease, without immediate treatment she would not live long. We headed to UCSF to be admitted having no clue what was to come in the following months. Our entire lives have changed. I was a stay at home/work from home mother to our 3-year-old daughter, Presley, and now I am unable to work as well as absent from my 3-year-old’s life 5 days a week while I care for Riley at the hospital. Presley has had to be moved into daycare so that my husband, Chris, can work simply to cover our medical insurance premiums. Our expenses continue to pile onto our shoulders faster than we can even keep track. Riley has made it through her chemotherapy and bone marrow transplant all before the tender age of 4 months but still has a very long and scary road ahead of her. Bills, medical expenses, lost wages, supplies, the list of financial burden goes on and on. I hate that money is even an issue...it seems so meaningless to even think about when I am constantly missing my 3-year-old who is hours away at home while I watch my 4-month-old fight for her life. It's exhausting and heartbreaking but turns out expenses don't go away just because you have a sick child. I stumbled across your organization while researching on how it is that families make it through these times. I was immediately overwhelmed by the generosity and support you have provided to so many families. Even if you do not choose our family to assist, I want to give a heartfelt thank you to you all. The work that you do to help these children is remarkable.”
Ways Passion 4 K.I.D.S. Has Made A Difference for Riley
Helping with medical and cleaning supplies to keep her environment germ-free
Providing playset for Riley and her little sister to play on while they are on isolation