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 for the results. With everything that was going on, we tried to maintain routine and continue with daily life. We celebrated Alison’s 2nd birthday in the hospital. Not exactly what we wanted, but the family and the hospital staff made it a celebration we will never forget.
Ali has been amazing through the entire process, which has included three surgeries, many hospital stays, much testing, and much discomfort. If you were to meet Ali, you would never be able to tell what this little girl has been through. She has a beautiful smile that immediately touches your heart and soul.
Ali has made so many new friends during this process. She continues to be our strength and inspiration, along with the thousands of prayers that are being said for her daily. Our friends and family have been an incredible source of support for us through this journey, but one of the biggest bonus blessings of all, was our introduction to JW House.
The JW House
We were first introduced to this beautiful place during our initial stays at the hospital. It was during Ali’s surgery to remove what was left of her tumor that my family was able to experience all that JW House has to offer. On this long day, my family had been at the hospital since 6:30 in the morning, and it was now 5:30pm. They were discussing where they might go for dinner. One of the hospital social workers overheard their discussion and told them about JW House. She even called to see what was on the menu! Well, it happened to be Chinese food that evening, so they decided to walk over since it was conveniently located right across the street, and they were exhausted.
April, the House Manager, welcomed them with open arms. You need only step into JW House, and you are instantly in a place of comfort, support, smiles, calmness, relaxation, and a spiritual aura that is just unexplainable. After touring the house, they were able to sit down to a wonderful dinner surrounded by a host of warm and loving volunteers. After dinner, they proceeded to tell Jon and me that we MUST visit the house.
When I was informed that Alison would start daily radiation treatments the following week after her surgery, I became concerned about the daily commute from Burlingame to Santa Clara. I then reached out to JW House, and spoke with April about possibly staying at JW House during this time. The Cancer Treatment Center is right across the street from JW House, so it would allow Ali to sleep in and be close enough to come back and rest after treatment. I was given a reservation and was able to stay there during her treatments.
Having JW House to come “home” to after each treatment made the whole ordeal so much easier for Ali, for us and for our family. JW House is truly a “home away from home” with all its comforts. Ali was able to play with toys both inside and outside, watch movies, ride in the wagon, play in the playhouse outside, have her cousins come and visit with her to play, and just be a little girl.
Our family members were able to visit during the day, and enjoy family dinners together at JW House in the evenings. I believe, with all my heart, that the love, support, comfort, and compassion from the House Manager and volunteers was instrumental in Alison’s getting through all that she did. Staying at JW House allowed Ali’s dad to be with us and continue to work everyday, and for me to spend more quality time with my daughter. Staying at this beautiful house gave me a sense of comfort, peace, relaxation, and structure with the addition of incredible love from April and the host of volunteers.
There is something very special about this beautiful home, and I have to believe that it is the incredible JW himself, who continues to surround the home, both inside and out, with all the love and compassion of his most beautiful vision, and that he keeps that vision flowing through the home everyday. I know too that having April, the House Manager, and the host of amazing, loving, caring and committed volunteers is something we will never forget.
As our daughter continues on her journey, we are most comforted knowing that JW House is just across the street, and we will never, ever forget how this home forever changed our lives, and helped us on this long and scary journey. Our entire family is so appreciative of this beautiful place during one of the most difficult and challenging times of our lives.
We will be lifelong supporters of JW House, and will always come and visit. We cannot thank April and her volunteers enough for the positive and loving impact they have had on Alison’s life, and on our family as well. We will be forever grateful to all of you, and for all that you do on a daily basis to provide a beautiful home and environment for children and families experiencing difficult journeys.
