Meet our "Stars"

This is my shining star, Daniel. Daniel is the 3rd of four children and a beautiful reminder of just how much the simple things can mean in life. Like many NF individuals I have met over the years, Daniel reminds me everyday how much we take for granted. His vision is poor, his muscles don't carry him far, he has been through more medical tests and procedures than most elderly adults and just when I think life is so unfair, he bounds through the hall with his contagious laughter, all smiles. He loves life. Nothing gets this kid down. He has taught me so much over the years and it is because of him that I have found my path in life. I can not change what happens to my brightly shining star but I can be here to remind others that we are not alone, bring some light to their lives, and extend that bit of help we all need sometimes. He is why the NF Family Foundation exists. He is my shining star. You can watch Daniel's story here!
I Love you Daniel!
-Mommy

I have three stars in the sky of my life. Their names are Camron, Amber, and Evie. I married Camron knowing he had NF but not realizing that it could be passed onto our children. Camron is the sweetest man I know, and I'm lucky to be married to him. Our daughters, Amber and Evangelyne, are equally beautiful and kindhearted. I see spots so often that I sometimes expect to see them on my own body. I feel like I have NF1 too, because their hearts are just so beautiful and it makes me want to empathize with them. My little family isn't perfect, of course, but they are very special to me and I love them very much. - Jenn

Keara Jean who we call KJ, is our little angel who came into this world as a change of life gift. Kj has 3 older siblings 25, 23, &13. When we found out KJ had NF1, we didn't even no what it was. She is a 6 year old beautiful little girl who fights the fight daily. She has a passion for animals, her favorite is horses. KJ, when possible visits the Carriage Schack Farm who she bonded with a special friend. His name is Thunder. Thunder helps KJ with theraputic riding, a special bond for 4 years. KJ was recently put on an iep and is home schooled with a tutor, due to her immune deficiency. We also have two therapy dogs that visit at our hone 2 days a week. Kj has been through so much with fine and gross motor development, brain tumors and tumors through out her body inside and out. Our motivation was to educate as parents and learn all there is to know about what she encounters. Recently, she has seizures, but nothing stops this child with the most strive she has towards life. Our mission in life is to help fund different organizations by having a fundraiser yearly, KJs Ride For The Cure. We don't know day to day with KJs health. We do know we will never stop striving to pay it forward with raising for a cure, funding, and getting the awareness out there. Our little girl taught us that you can have anything in this world. If you don't have your health, you strive and never give up the fight.
We love you KJ. Love mama & daddy <3

Eli has had a very hard time since day 1. He had several ear infections early in life that made it hard for him to learn to speak. When he was 2 he had tubes placed in his ears and the difference in his response to sound was tremendous. We started him in speech therapy hoping he would catch up. Around theat time I began to notice a very large lump beginning to grow around his left ear. At the time I knew nothing about NF, except that Eli's father has it, so I started doing research and was very frightened by what I found. I got very desperate for his doctor to hear me and look into this new lump on his head. But as many people with NF in their lives know, it can be very hard to get doctors to listen. I was told that I was over reacting and that the lump was just a natural part of his skull. Another year passed and we were able to move which allowed me to find a different doctor and get another opinion. It was decided that it was a plexiform neurofibroma. It was nice to finally have someone recognize that I wasn't going crazy and within the next year Eli had the surgery that removed it and another small tumor on the back of his head. Before this surgery I decided to have his hearing checked because I thought that he was not progressing as he should have been in speech therapy. What we learned was devastating. Eli is completely deaf in his left ear and even after several tests no one could tell us if it was caused by damage because of all those ear infections years ago or if it was caused by the plexiform that had wrapped itself around and under his left ear. As if all of that wasn't enough, Eli was diagnosed with Apraxia of speech the summer before he went into Kindergarten. This is a disorder that makes it very hard for him to control the muscles in his mount. So even though he knows in his mind how to say certain words, he can not make his mouth form them.

Eli is more then just my star. He is a hero and a wonderful example of bravery. No matter what he faces he does so with dignity and a much better attitude then I could ever have. When we were getting ready to make our trip for the surgery to remove the tumors form his head, all he wanted was answers. What were they going to do to him, how were they going to do it, would they put him to sleep, would they use a knife? I tried to be as honest as I could without scaring him but none of it phased him. He had a smile on his face all the way up until they took him back. When he woke up he was down for a few hours but bounced right back like nothing happened. He doesn't speak well and it is hard for people to understand him but that does not stop him from making friends with everybody. And I do mean everybody!
This is Eli right after his surgery while we were staying at the Ronald Mc Donald house. He has a drainage tube still in and he was so hyper the whole time that I did not breathe until it was taken out for fear that he would rip it out. These bikers came with a bunch of toys and let the kids ride their bikes. I love this picture because Eli chose the super man cape and it suits him and shows him for the hero that he is.

Brandon is the youngest in our family. He has an older brother Michael who loves to look out for his younger brother. Brandon's dad Thomas has NF1 and we knew that it could cause tumors throughout the body but had no idea that it could cause other issues such as bone deformities. Brandon was born with a bowed left leg and we found out that it was due to his NF. When Brandon tried to stand up as a baby his left leg fractured. He under went 4 surgeries and had multiple bone graphs to try to correct his fractured bowed leg. Unfortunately, in Brandon's case his bone never healed and even re fractured. After seeing our little guy go through pain and surgeries we wanted him to be a kid and to walk and play. After discussing with his doctor we decided that amputation below the knee was the best option for Brandon. Once Brandon starting wearing his prosthesis his whole attitude changed. He was so happy to be running, playing, and keeping up with all the other kids. He is a determine little boy and wanted to do everything on his own with no help from anyone. Since Brandon has NF1 his neurologist wanted to do an MRI on Brandon's head and they did find 5 pea sized tumors near his brain. The tumors aren't causing Brandon any problems thus far and they might not ever cause him problems. If down the road the tumors do cause Brandon problems, then they will need to remove them surgically. Brandon will see his neurologist yearly to monitor his tumors and his NF1. Brandon is such a sweet, determined, loving little boy. With all the he has been through he truly inspires me. He keeps pushing forward and he is my NF hero. Our family is determined to raise awareness about NF and hoping one day a cure is found.

Here is a little video of Brandon's journey:
www.youtube.com/watch?v=bCDbPX59yts

We love you so much Brandon! - Jennifer, Thomas and big brother Michael.