Family Stories

Ali’s Story

Written by Julie and Jon, Ali’s Parents Our precious daughter, Alison, (Ali) was born on February 28, 2009.  At 3 months old, she was diagnosed with a condition called Neurofibromitosis.  This condition primarily effects nerve growth and causes café au lait spots on the skin, but has other more serious side effects such as tumors, scoliosis, seizures, learning disabilities and complications with the eyes.  There are two types: cancerous and non-cancerous.  Ali has the non-cancerous type, NF1. At age 1, she was diagnosed with a second condition called Juvenile zanthro-granuloma, a skin and blood condition that usually happens in children.  We were told that her NF1 made her more susceptible to Leukemia. In early February 2011, Alison became sick.  It looked like the life had been sucked out of our poor little girl.  She soon stopped going to the bathroom and after treating her for constipation for two weeks, doctors told us they had found a mass.  On that day, our lives immediately changed from watching our little girl grow and progress into a beautiful toddler, to one of being overly cautious and ruled by fear. To think that someone so special and loving could be taken away from you is unbearable!  Your body aches, your mind races, your soul is damaged and your faith is questioned. Luckily, we are incredibly blessed to have a small but close-knit family. Everyone dropped everything to be part of this very scary journey to support not only Alison, but Jon and me as well. We started this journey with a battery of tests and two surgeries, waiting with so much anxiety and fear... read more

Sophie’s Story

Written by Sarah and Alex, Sophie’s Parents Sophie was in a big hurry to enter the world. On June 3, 2013, after hours of excruciating pain and emotional anguish, our beautiful baby girl was born weighing only two pounds and 12 ounces. As my husband, Alex, and I sat with our tiny, tiny baby, all we could hear were words like “brain bleeds,” “developmental delays,” “heart murmur” and “surgery”. Among these incredibly frightening words, Sophie’s nurses kept saying “JW House.” We didn’t know what JW House was, but we thought it was worth the walk across the parking lot to check it out. We were so consumed with helping our tiny, precious baby that our own basic needs were neglected our first few days at the hospital. After barely eating and drinking, we came to the point that we were too exhausted to drive to our San Jose home, but were terrified by the prospect of leaving Sophie. We first stepped foot on the front porch of JW House exhausted and emotionally drained. As we were welcomed inside and shown “our” fridge and “our” home, I broke down crying as I realized people wanted to provide for us during this incredibly difficult time. JW House immediately became our sanctuary, our place away from the loud beeps and bright lights of the hospital. For the 14 weeks our Sophie was in the hospital, we spent a few hours of nearly every day at JW House. It provided a safe place for us to nap, rejuvenate, do work, and speak to other NICU families. At dinnertime, we would laugh, pray, cry,... read more

Vivian’s Story

Written by Amy and Seth, Vivian’s parents On Thanksgiving Day 2011, our seven-month-old daughter, Vivian, underwent her first surgery to remove a tumor in her upper airway. It was our first hospital experience ever. Vivian had had a traumatic code blue and our minds and our hearts were reeling with emotion. They were the darkest day of our lives as we wondered if our daughter was going to live, yet it was one of the brightest the day we were introduced to JW House. I had so much emotion that I broke down crying when the door opened and we were greeted. As Vivian’s complications progressed, we learned that begin tumors were growing from her tongue down her airway. Each hospital visit, we were so grateful to have a place to be a family, just steps away from the ICU. JW house has completely changed the typical cold, stark hospital experience to one of warmth and comfort. Nine months after our first visit to the hospital, Vivian received a tracheostomy to breathe on her own. We never expected this to be our journey, but we are so thankful for the lifelong friends and ongoing support we have received from JW House and this experience. We are so grateful that JW’s dream was fulfilled. Vivian, now three, has held each of her birthday parties at JW House. We want to teach her to give back to the places that mean the most to her, and JW House has done so much for our family. Instead of gifts, guests bring donations of much needed goods and money for JW House. We... read more