Our miracle baby Torah entered this world on our doctor's recommendation via C-section at 38 weeks on 08/31/2016. She was a beautiful 4 lb 11.5 oz baby with no visible problems. At 5 days old Torah's journey with Severe Combined Immunodeficiency or SCID started. Her newborn screens came back abnormal and the journey began with immunologist. We found out that SCID is curable but it is going to require a great deal of sacrifice from our whole family. Treatment requires Torah to take multiple medications, injections, lgg infusions and keeping her home away from people. The only hope to cure SCID was to have a stem cell transplant, but this step could not begin until her complete genetic blood work up came back to see what steps to take. The plan was for Torah to have the transplant at 3 months, but after all the genetic testing came back our world took a major turn. Torah not only had SCID but she had a rare type and transplanting on an infant at 3 months was not a good idea due to the lack of research on infants that young. Her long and bumpy journey started with the risk of her getting sick because winter was right around the corner. Confining her and ourselves from the outside world was our only option for the best outcome. So our two income family went down to one and with the cost of just living daily and Torah's medical needs we are in a fight to just make it day to day.
About 5 weeks ago we got the green light for Torah's transplantation. The journey started with preoperative imaging, labs and a planned admission date, June 19, 2017. Torah's Chemo was started and stem cells were transplanted on the 26th. Torah's wait begins and her current hospital stay is looking to be around 3 months. This journey is still going to be long, bumpy and very challenging. We are hoping that with the donations that you provide us we can make the valuable time we have with Torah the very best. Also make sure that Torah has the very best chance to win this fight against SCID.
Thank you for taking the time to read about our sweet Torah. If you can not help can you please share Torah's Fight and Pray for our baby girl.
Manuel & Katherine Valero