Genetic Testing For Future Children

Our daughter, Aleena Kay Patton, was born on September 14, 2014 at 3:22 am, weighing 2 pounds and 15 ounces and she was 12 1/2 inches long! She passed away shortly after around 5:00 am due to a rare but fatal disease called Osteogenesis Imperfecta Type II, or OI Type II. OI Type II is a disease also known as Brittle Bone Disease. Some people can live their whole lives with other types of this disease, but unfortunately, Type II is fatal. When Aleena's Daddy and I found out we were going to have a baby, we were so excited! We were so ready to be parents to our little bundle of joy and to experience everything that comes along with having a baby and becoming parents! I still remember all of the joy and excitement I felt at our first doctor's appointment, getting to see our little baby on the ultrasound, seeing her little heart beating away and how tiny she was with me being just 9 weeks along. Then came the excitement, anticipation and wait of finding out if our little bundle was going to be a boy or a girl. Finally came the time to find out and to get to see our baby again on the ultrasound when I was about 22 weeks along. Her Daddy and I were both so excited that we could hardly wait as the ultrasound technician checked out our baby, and then she said the words, "IT'S A GIRL"! I can't put into words how happy and excited hearing those three little words made us. Right then and there, all of my dreams for our daughter began! We were sent back out into the waiting room to wait to see the doctor for a check up, but neither of us could wait any longer to tell everyone the news. We both started calling all of our family and friends to tell them we were going to have a baby girl, thinking everything was fine and that our daughter was healthy. Then we went in to see the doctor and I heard her say the words, "The ultrasound shows some abnormalities that we are worried about." and my heart just stopped! She proceeded to tell us that our daughter had a thickening of the skull and that her legs were too little compared to where they should have been at that stage in my pregnancy. She told us that both were signs seen in babies born with Down Syndrome or Dwarfism and asked if anything like that ran in our families, but neither does. She started explaining that we would need to be seen by a high risk Genetics Doctor to determine what was wrong and to receive a diagnosis, but that something was definitely wrong and we needed to be prepared. My heart was completely broken and at first I was devastated, but after the news sank in, we both decided that no matter what was wrong with our baby girl, we would make it through and give her the best life that we possibly could, we just wanted her to live! Her being born with something wrong didn't matter to us, we were going to love our daughter no matter what. We were already completely in love with her! We had to wait TWO WEEKS after hearing that news, before we could be seen by the Genetics Doctor and during that time, we decided on a name, Aleena Kay, the perfect name for our little princess! It was finally time for our appointment and after seeing the Genetics Doctor and having a more detailed ultrasound, we were told that our daughter had Osteogenesis Imperfecta Type II, which is a rare, but fatal bone disease that causes the bones to be so brittle and fragile that they fracture repeatedly in the womb and that our baby was already showing fractures, which wasn't good news because usually, the earlier in the pregnancy that the baby starts showing signs of any disease, the worse that disease is going to be! Because it causes the bones to repeatedly fracture, it prevents them from growing and forming the way that they need to. It also prevents her little chest and ribs from growing and forming like they should, which means that her lungs don't have any room to form and grow, which is what makes this type of the disease fatal. Lung tissue is not something that they can grow or fix for her while she is growing, so if she can't form it and grow her lungs on her own, then she isn't able to get any oxygen once she is outside of the womb and the umbilical cord is cut. I was the only thing keeping her alive! We were told that because this horrible disease was not curable or treatable, all we could do was continue to watch her grow and pray for a miracle! That was the moment all of our dreams for our daughter were shattered! The pain we felt at every doctor's appointment, being told that she wasn't making any progress and that she most likely wouldn't even survive the birthing process, was indescribable! I have never felt such heartache in my life, knowing that once she is born, if she makes it through the birth, our time with her would all depend on how long she could hang on, it could be just seconds or one minute, knowing that she may come out and be in so much pain that the doctors would have to step in and give her  medicine and try to ease it all for her and knowing that everyday I was closer to losing my little girl, that is the most painful and heartbreaking thing in the world! I was told that I needed to enjoy the rest of my pregnancy because that was the only promised time that I had with her. But can you try and imagine how hard it was to try and enjoy myself and my pregnancy, knowing that we weren't going to get to bring our baby girl home from the hospital, it was a really tough time for both me and her Daddy! Then came September 13, 2014, contractions started and I tried so hard to make them stop because I just wasn't ready yet, but thinking back now, I never would have been ready, so that night when I knew she was coming and I couldn't hold off anymore, we went into the hospital and were told that we would have a baby by the time morning came. So, at only 31 weeks along, On September 14, 2014, a morning that we will NEVER forget, Aleena Kay Patton made her way into this world. She survived the birthing process, but just did not have enough lung tissue to breath, but even though she couldn't breath, her little heart just kept on beating. We were lucky enough to get that small amount of time with her and we were so thankful that she did not seem to be in any pain, but just at peace! Because she was so small through my whole pregnancy, her Daddy NEVER got to experience feeling or seeing her move, not even once, but when she was born and made it into his arms, she had enough strength to make one small little movement just for him, something special between daddy and daughter that her Daddy will forever hold in his heart and be thankful for! She held on long enough for us both to hold her, kiss her, give her all of the love that we possibly could and for us and our family to tell her how much we will forever cherish her before she left us to go back to Heaven. September 18, 2014, we laid our sweet angel baby to rest and although we both know that she is in a much better place now, it was the hardest thing that we have ever and will ever have to do! I can not put into words the pain and such loss that we feel knowing we don't ever get to have her here with us again, but we know that she will forever be watching over us from above and that now she will know nothing but love and joy. We have been told that it was most likely random that this happened to our baby girl, but that there is a chance that one of us could have passed on what caused this absoultely devastating disease. We want more than anything to be able to have another chance at being parents, but we will not take that chance without knowing for sure that one of us didn't cause this. We won't risk putting another baby through this disease or risk having to go through the pain of losing another baby ourselves! Unfortunately, Genetic Testing is VERY expensive and we alone can not afford to be tested. We have been told that it is over $4,000 per person where we live and we would both need to be tested, so we are asking for your help! Any donation, no matter how big or how small will be so very appreciated! We would also like to ask for your help in sharing our story with the world. Even though our little angel was only here for a very short time, She was sent here for a reason and I believe that reason is to help bring more awareness to this rare disease and to help bring other families who go through this in the future, someone to turn to for answers, help, or just to talk to! It would have been somewhat of a comfort during my pregnancy and after such a huge loss, to have someone who had been through the same situation and could give me advice, answers or just listen to all of my worries, fears and pain. But because this disease is so rare, there isn't very much information out there on it and there definitely wasn't anyone that I could find and get in contact with, who had dealt with this disease before. So, PLEASE SHARE, help us get our story out there so that when the next family turns to the Internet searching for answers, other stories, information or help, they will be able to read our story and get in touch with us if they wish too. We will be forever thankful for your help in our journey! We can't reach any of our goals without your help, so please,  help us raise our donation goal on here and/or help us get our story out to as many people as possible! Thank you all so very much!  

In Loving Memory Of
*Aleena Kay Patton*


Me and my beautiful Angel



IF YOU ARE A MOTHER OR FATHER GOING THROUGH THIS OR A FAMILY MEMBER OF SOMEONE GOING THROUGH THIS, YOU ARE MORE THAN WELCOME TO CONTACT ME!
 
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