Bee Strong

Hello my dear friends and family,

Those of you who know our family are aware that my five-year old daughter, Phoebe, has been at Lucille Packard Children's Hospital at Stanford Hospital since Nov 8, nearly eight weeks. She has undergone numerous procedures during this lengthy admission and may have more before she can be safely discharged. She is expected to be there at least another week and likely longer. When she returns home, she will require months of therapy and follow-up appointments to recover from this ordeal. The toll this has taken on her and our family has been immense and intense.

I have recently been encouraged and told "Let people help you. They want to help you" by family and lifelong friends who have witnessed my story and struggle the last few years, and especially these recent months. We have had tremendous emotional support through it all and are so incredibly fortunate to have the community of love we have around us, but we are facing an extreme financial crisis. As a single parent, I have had to set aside my career as a landscape designer to care for Phoebe and I am unable to provide for all of our financial needs right now. It is hard for me to ask for help and I have waited until I cannot wait any longer to make this appeal. I thank you in advance for your understanding of the urgency of my request for your financial support. We hope to raise this money by Jan 8, before Phoebe comes home. Pls help us reach that goal by contributing whatever you can and by sharing on your personal page and in groups you are active in on Facebook and in the community. Thank you.

When Phoebe was born, we had no idea that she had an extremely rare genetic condition that only a few hundred people in the world have been diagnosed with. She was over 8 lbs at birth, born five days past her due date. For the first few weeks she nursed easily and grew like a typical, healthy child. Soon though, I noticed her breathing got worse and I began to bring her regularly to the clinic for check-ups. Her symptoms continued to worsen. She wouldn't poop and began vomiting. A lot.

At 3 months, after hours of waiting in the ER, we were sent home from our local Dominican Hospital and referred to Lucille Packard Children's Hospital @ Stanford. That first time at the LPCH ER, we were sent home with suppositories and told she was constipated. Halfway through the next week, she started vomiting so much in a 24 hour period that it turned dark green. She lost so much weight and was so dehydrated, her skin began to look like a cheap suit hanging off of her. When we left for Stanford, I said to my mom, "I'm gonna chain myself to the chair if they try to send us home again." Thankfully, she was admitted and after much testing and several days not knowing what was wrong, she went into emergency surgery to correct Volvulus (twisting of the intestines), a very rare condition, especially for infants. Fortunately, we were at LPCH and they wanted to test her for a genetic condition, based on her many symptoms.

At 5.5 months, we learned the name of that condition, a condition so rare it has no formal name other than what is basically a chromosomal address and medical definition: 16p13.11 microdeletion syndrome. Based on the limited case histories available, we were told that she would likely never walk, talk or be independent in any way. We were told that she would never eat again and would be fed intravenously Total Parental Nutrition via a central line for the rest of her life, which would be considerably shortened because of the TPN. We were told the oldest living person, who lived on TPN since birth was 27 years old and that in order to get to that age, Phoebe would likely need a liver transplant at some point because TPN is very hard on the liver.

That was the first of over 130 hospitalizations and more than 30 surgical procedures. Phoebe has had years of speech therapy, occupational therapy and physical therapy to overcome delays. She is not only able to walk and talk but she was able to attend mainstream kindergarten this fall in Lodi, CA and flourished. She began her first dance class this fall as well, where the teacher commented to me afterwards, "She's very coordinated!" You never saw a mother beam with more pride for her daughter in that moment. She's also extremely bright. She began reading at 3, doing simple math at 4, and now she's building robots at 5. She looks and acts like any typical 5 year old girl, except when we lift her shirt to "feed" her. She has what we call "invisible disabilities". Phoebe is a medical miracle. She has no idea how truly strong and brave she is. Since that very first night in the hospital, I tell her each day, "you're the bravest person I know" and I mean it with all my heart.

Your donation will go to medical, legal and numerous other basic expenses, including food, gas, utilities and rent for now and when I care for Phoebe when she returns home from the hospital. If enough people gave anywhere from $10-100, I think I could easily meet my goal of $10,000 to help recover from the financial impact of the last few months and prepare for the next few months. You will have my endless gratitude and free gardening advice in return. Thank you for reading and sharing. Wishing you all a beautiful new year, full of love, health and grace...oxo