For those who do not know, I also have another blog called TEAM ALEENA, dedicated to my baby girl Aleena who passed away in September due to a rare bone disease called Osteogenesis Imperfecta Type II. You can visit that blog and read more about our journey and story at WWW.teamaleena.WordPress.com
Just for a little background, at 22 weeks pregnant, we found out that we were having a daughter and that she had this disease. This disease causes EXTREMELY fragile bones and they repeatedly break/fracture while she is in the womb and because of this, her bones can not grow and form the way that they should and so it causes baby to be way too small! There are other types of this disease, but Type II is the rarest and worst type. It is fatal. There is less than a 1% chance that a baby will survive this type and if they do survive it won’t be for very long. It is fatal because on top of the bones fracturing and baby being too small, it causes the chest/ribcage to be way too small also, so small that the lungs have no room to form and grow and so once the baby is outside of the womb, they pass from not being able to breath on their own. Unfortunately Osteogenesis Imperfecta II is not treatable and there is no cure.
We were told our daughter wouldn’t survive the birthing process. But, she did. Our baby girl lived for 59 minutes. She never opened her eyes, she never cried and she never took a breath, but her little heart kept beating for as long as it could!
We were told that although this is a disease that can be random, there is a chance that her father or I passed this disease down unknowingly. We want more than anything to try again, but we need to have genetic testing done before we can. We won’t take the risk of watching another baby go through that or go through the pain of losing another child.
But, the type of tests we need are VERY expensive and we can not afford it on our own. We have been saving our own money and raising donations for a few months now, but we are asking for your help!
For both of us to be tested, the cheapest it can be done will cost $6,500.00-$7,000.00. We have only raised $400.00 so far.
If you can find it in your heart to help us on our journey we would be forever grateful to you! Even ONE dollar helps us towards our goal!
If you would like to help out with a donation, you can do so at:
Even if you can’t help with a donation, I ask that you PLEASE help share our story by reblogging or sharing it on your social media!! We need any help that we can get and we would also love your help in just sharing our story, so that maybe another family going through this will find our story and my blog and see that they are not alone in their journey with this horrible disease!
Thank you so much in advance!
For more information or to see pictures of our little angel, please visit my other blog!
Thanks For Reading!
-Wife & Mother & Friend