Newborn diagnosed with SCID "bubble boy" syndrome

Alissa - posted on 11/08/2013 ( 1 mom has responded )




Hello to daughter Riley born July 15th of this year was diagnosed with Severe Combined Immunodeficiency and admitted to UCSF Childrens hospital August 9th where she remains. In just her 4 short months in this world with no immune system she has endured infection, chemotherapy and a bone marrow transplant. We are now 4 post transplant and are just holding our breaths awaiting for her little body to let us know she will be ok.

Most days she is all smiles, it is truly amazing how she has sailed through such trials and making it look easy half the time. Last week we were thinking we were getting closer to discharge however she has gone downhill a bit these past few days so I'm thinking those discussions have been taken off the table. I definitely don't want her out a minute too soon however with a 3 year old at home (which is an hour and a half from the hospital) I am so looking forward to having our family all together again one of these days. I live at the hospital with Riley during the week and on the weekends we have different family members who have been wonderful about going to stay with Riley so I can go home and spend time with Presley. I joined this group to possibly connect with other Moms who have gone through hospitalization of a newborn or having an ill child in general, it is such a challenging time and balancing emotions has proved to be trying to say the least. I do write a blog updating friends and family on Riley's progress that has managed to reach other mothers struggling with similar situations and has helped to bring understanding and comfort to both myself as a writer and others as readers.

I encourage anyone to follow along in our journey, I guarantee you if nothing else little Riley will inspire you. She truly is amazing and if you start at the beginning you will see what I mean. Thank you all. xoxo


To follow along:


Sharon - posted on 11/17/2013




didt ask for moneyask I any one been to court and to help me your make out that I ask for money when I did not

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