Brynley's medical fund

"It is with a heavy but hopeful heart that I write this post. I have debated the last few days how to go about making this announcement. Please bear with me as I fight emotions to make this post.

Our beautiful and perfect Brynley is such a blessing to our family. At birth we noticed her skull was differently shaped in the front of her forehead, especially for a C section baby. Not thinking too hard into it we figured it may go away considering she was so tiny. After her 2 week check up we were notified that we needed to keep an eye on it to see if it goes away and if not we would be referred to a cranio specialist in Portland.

Well after that visit, I did what any other parent would do. I googled it, and I got the shock of my life. I freaked myself out, thinking worst case scenario for a full day then said to myself I will be positive and hope for the best. I told myself that she would be fine and I was overreacting. That feeling was short lived.

Friday we went to OHSU and it was confirmed that my worst fears were correct. Brynley has been diagnosed with metopic craniosynostosis. This particular disorder only happens in 1 out of 2000 babies, and there are no known causes for this disorder. In short this diagnosis means the suture in front of her head that normally is open to allow her head to shape coming out of the birth canal has actually fused shut faster than it should. I'm posting the picture to illustrate the type that we are dealing with. At this time developmentally she is perfectly fine but the concern comes as her brain grows, the skull in front won't. If not treated she can have a list of possibilities - developmental delays, blindness, seizures, death...etc.

As you can imagine, this was devastating to hear. I won't go into graphic details but the only treatment for this will be surgery which I will let others research so I don't have to rehash it again. The surgery will be done usually between 8-12 months. She will be monitored quite extensively until that time comes, and if there are any concerns of her brain growing too quickly she will need to go into surgery earlier than that.

We are doing our best to be strong, but obviously some days are better than others. I share this in hope of others knowing more about this disorder, maybe even finding others who've been through it. I am doing research to find out as much information as I can, to educate myself as we travel this road. I know that Dornbecher's here in Portland is amazing but I'm also checking out other hospitals across the country. I want the best options for our precious girl. Surgery is necessary and needed so regardless we have to face this reality but we really need as much support, prayers and help with this journey as possible. God placed Brynley in our lives because he knew we were strong enough to overcome this."

This is the informative post my sister shared regarding my niece,  Brynley. 

i am creating this go fund me for my sister and my niece in Oregon. My sister will now have to quit her job and stay home full-time to care for Brynley. With the upcoming surgery in a few months, funds are needed to travel and cover fuel and living expenses should she have to get a hotel, or have an extended stay at the hospital. My sister also has 2 other children that will need taken care of, meals and rides to and from school and activities. We ask for any help at all, even if it is just prayer. We know that God will provide and see us through this.