Tatiana's Story, A Worthy Cause

February 14, 2018 Duke University Hospital Valentine’s Day and Feature Interview with the Young Family/Click Link Below. http://cbsloc.al/2GdxkNw Inside Edition Link/Ruben and Tanya Feature http://www.insideedition.com/media/videos/hospital-transforms-play-area-romantic-dining-room-patients-parents-40727 On Behalf of our Daughter, Tatiana R. Young (Teana)         My name is Ruben W. Young. I and my wife Tanya R. Young are the adoptive parents of Tatiana R. Young (Teana). Tatiana is intelligent, artistically gifted and extremely caring towards others. Tatiana is truly a very special child with many gifts to offer the world.  I say this because even with her personal health stuggles, Tatiana manages to bring a smile and some joy to everyone she meets.         Tatiana has suffered from birth with a disease known as Hemoglobin SS Sickle Cell Disease.  This disease has taken the lives of so many with the statistics showing that most females with this condition only live to age 48 and 18 percent of those that reached adulthood die because of organ failure, predominately renal. This is why I'm humbly asking you to support this Worthy Cause !!!          Tatiana has endured this sickness for 14 years along with a host of other complications due to her battle with the Hemoglobin SS Sickle Cell Disease.  In general, Hemoglobin SS Sickle Cell Disease is a chronic, often debilitating condition that can cause a variety of symptoms, including acute pain, organ failure, bone and vision damage and gallstones.  There is an increased risk of stroke as well as deadly lung, blood and brain infections.  The onset of symptoms is unpredictable and may require home management, outpatient care, and inpatient hospitalization. The normal treatment protocol includes: ongoing preventive medication and tests, regular medical monitoring: blood transfusions/exchanges; and pain control. The normal treatment protocol has been consistent with Tatiana since birth.         We as her adoptive parents have cared for her through two cerebrovascular accidents (strokes), at ages 2 and 11, which resulted in mild intellectual diability; hemochromatosis (iron overload), due to monthly blood transfusions prescribed to prevent additional strokes; and continuing narrowing of the vessels of her brain, as identified by several recent MRI/MRA scans. Based on this history, Tatiana was at an elevated risk for additional strokes and further, collateral brain damage.           It is because of the progressive nature of her condition, even with the most advanced medical treatment available the sickle cell disease continues to attack her body.  With futher evaluation, the Children’s Hospital of The King’s Daughter (Blood Disorder Care Team), suggested a more aggressive means of treatment.  In order to receive the treatment a (Bone Marrow Transplant) using stem cells, Tanya and I would have to relocate to Durham, NC for a minimum of one year.   As predicated by candidate guidelines one parent would have to be a dedicated caregiver, this subjected our family to additional problems because of financial needs and obligations.           With limited support, we did not hesitate to make the leap of faith for our daughters well-being. We put only what was needed into storage and gave away the rest of our belongings to family and friends, surrendered our lease and left Hampton, Virginia for Durham, North Carolina. That was 4 months ago in October of 2017 and since that time we have been living between the Ronald McDonald House in Durham and the Duke University Hospital.  For over 100 days, my wife and I have stayed day and night by her bedside while she was processing through the Bone Marrow Transplant.  The normal Hospital stay is 60 to 90 days and our release date is still to be determined.  Tatiana, Tanya and I are in need of your Help.           As I shared in the beginning of Tatiana's Story, The Bone Marrow Transplant is an aggressive treatment and she is experiencing physical and mental difficulties with the severity of the process.  Through two weeks of chemotherapy, the days and nights of sickneses, the somtimes severe pain and tears, we are yet faced with the longevity of the on-going medical treatment.  After fourteen years of fighting this uphill battle with Sickle Cell, these last 4 months have been the worst I could have imagined.  Several complications have made our stay increasingly long and complicated.         A virus Cytomegalovirus (CMV) that can lie dormant in the body and is estimated to  infect more that half of the population by the time they reach middle age has become active in her body.  Due to the chemotherapy process that suppresses the immune systems ability to properly fight off infections, the one (CMV) is active and complications along with the treatment has been of concern.  Additionally, the condition known as Graft vs. Host in transplant patients is the term used when this new immune system from the donor attacks the host body.  The donor cells see your body as foreign and attack it, which causes damage. To combat this you need to calm the immune system.  The conflict Tatiana is now faced with is to control the Graft vs. Host with medication therapy that calms the immune system but to cure the (CMV) the immune system has to be stimulated. This is the Battle of a Lifetime.          Our extended stay has caused some financial and debilitating conditions that necessitates the need to reach out for your support.  We are people of faith and we are asking in the hopes that those who can help will do so.  We do not know what the furture holds, no one really does but we are aware of the possibilities. Our choice is to speak Life and Health, so with your generous support through your Prayers and Giving we can conquer this diseases and enjoy the healing and cure through which God has so graciously provided.         To family, friends and anyone who can share in this effort, We Need Your Help !!!.  Whatever amount you can share, I am confident that GOD is going to get the Glory out of this.  Please Support. We are not asking for a Handout, Just a Hand! THANK YOU FOR YOUR SUPPORT IN ADVANCE Signed: The Young's Tatiana's Story, A Worthy Cause