THANK YOU! THANK YOU! THANK YOU!

What do you say when there are simply no words? How do you say thank you to someone who did something for you that you will never be able to repay him or her for?

It has been less than a week since we were told Rylie did in fact have a tumor on her optic nerve and we have experienced every emotion a person could experience since then. We cried tears of sadness and worry, we’ve been mad at the world because our baby is hurting, but then through everything we felt this amazing blessing in being able to help others thru similar situations. It has been the one silver lining in this whole ordeal.

We are no good at asking for help… I mean Brett is the person that walks around Home Depot for 45 minutes looking for one screw because he doesn’t need help. I am the girl who will sit in the bathroom crying because I am completely overwhelmed but refuse to ask for help because I don’t want to bother anyone. When you have gone so long without asking for help it simply becomes impossible for you to ask help on even the little things. So, when out of no where people just begin to help you, you become so over come with thankfulness that you don’t even know where to begin thanking them. We have had people bring us dinner, we have had people take us our to fun little events around town, we have had people come get Rylie for play dates, many people have sent us sweet messages of support, and to top it all off people have asked us how they can financially help Rylie and other kids with NF. The kindness and generosity of others is amazing. We live in a world that can be painfully cruel some times BUT we also live in a world that can be overwhelming heart warming as well. When times are hard the true goodness of others show thru their love and support for others- others they may have never even met.

We have already had almost 3,00 views to the blog to read Rylie’s story and donations for the Children’s Tumor Foundation have began to come in. We feel as if we will never be able to properly thank everyone for everything you all have done for us already. Our journey is just starting and we are so overwhelmed by all of the love and support we have received. We will forever be grateful to each and every one of you. While a simple “THANK YOU” does not seem like nearly enough of a thank you for everything you have done and are doing for our little family please know that we thank you from the bottom of our hearts for everything. We are surrounded by amazing family and friends and we are so blessed to have all of your working with us to help cure the children affected by NF. Your support will never be forgotten.

THANK YOU!

LOVE.

Brett, Brandie, and Rylie Evans

How Did We Know Rylie Had NF......

Some people have asked how we knew Rylie was sick… the short answer… to be honest we didn’t know she was sick. Rylie has always acted like a happy, healthy little girl. The only problems we have ever really had with her were chronic ear infections and her weight. She was always just a little bit too small (also a sign of NF). We never really worried too much because our nieces and nephews were always on the smaller side as well. Honestly we just fell into this diagnosis by asking questions. To be honest we owe Rylie’s early diagnosis to a few people the most important being her daddy! Brett is an amazing dad and he spends a great deal of time with Rylie. I was still in my last semester of college when Rylie was born so Brett spent 3 nights a week at home alone with her. Honestly, it was probably a great bonding experience for the two of them. From day one he has always been super involved and even when I was on maternity leave he helped me out a lot!

Throughout her first few weeks of her life Brett noticed she had what appeared to be a lot of “birth marks” covering her torso area. At first we brushed them off as “birth marks” but as Rylie continued to grow so did the number of birthmarks. Her 2-month well baby check-up was coming up so we decided to ask the pediatrician about it then. By July Rylie had went from 1 “birth mark” at birth to a total of 11. And they seemed to be coming out of nowhere. What we know now is these “birthmarks” turned out to be Café-au-lait spots, the most common sign of NF. Café-au-lait spots are the flat, pigmented spots on the skin, which are called by the French term for coffee (café) with milk (lait) because of their light tan color. People with NF almost always have six or more café-au-lait spots. (Fewer café-au-lait spots may occur in people who do not have NF; in fact, about 10% of the general population has one or two café-au-lait spots). In general, with few exceptions, tumors are not more likely to appear where there are spots. Café-au-lait spots are usually present at birth in children who have NF or, generally, appear by two years of age. The number of spots may increase in childhood and occasionally later in life. The spots may be very light in color in infants and usually darken, as the child gets older. Smaller pigmented spots, which may be difficult to distinguish from ordinary freckles, may also be present in people with NF. In those who do not have NF, freckling usually occurs in areas of skin exposed to sun. With NF, café-au-lait spots and freckling are present in other areas as well, including the armpit (axilla), where small spots are called axillary freckling, and the groin. Axillary freckling is not seen in every person with NF, but when present it is considered strong evidence of NF. After being checked out by her pediatrician he confirmed he too felt like these we not birthmarks but instead Café-au-lait spots. He suggested we meet with a geneticist at Primary Children’s Hospital and have Rylie examined by them. We were terrified. We were first time parents, scared out of our minds. A few months later we met with the NF team at Primary Children’s Hospital and got an official diagnosis of NF1. The geneticist was so surprise we found it this early. He told us most children are diagnosed with NF between the ages of 3-5. 

We got at least a 2-year jump on this disorder because of Brett. Because of him we found this tumor 2 years earlier than we may have if we waited for a problem to appear…because of him our little girl is able to get treatment early! No parent ever wants their child to be sick but I tell you what, out baby is healthier because even in the midst of complete sleep deprivation Brett refused to settle and demanded answers to his questions. Because of him our daughter is getting the helps she needs. Because of him our little girl will be okay! If their giving out an award for the Best Daddy Ever he deserves it!