Bramel has faced many obstacles in his short nearly four years of life. He was born with an encepholocele and had brain surgery when he was one and a half years old to repair it. A few months later he was diagnosed with intellectual disability. Beyond the brain surgery, he has had tubes placed in his ears, his tonsils and adenoids removed, and has had to be put under anesthesia to have his hearing checked every 3 to 6 months for the last 3 years. He wears a hearing aid and glasses and is nonverbal. He attends speech and occupational therapy and has recently started attending preschool in the special education classroom. Bramel is one of the strongest little humans with one of the biggest hearts and I am so proud to be able to call him my son.
Jeriko was nominated by his mom ➞
Jeriko is a happy, ambitious 3 year old boy. He amazes me daily although he is nonverbal.
Wasn’t meant to help him. He was sent here to save me.
Nathanael was nominated by his mom ➞
Nathanael is an Xtraordinary daddy! He’s patient, encourages creativity and development in the most loving way for his son, Nathanael Jr. He rearranged his work schedule to be home with his son during the day and I am proud of the decisions he’s made, though challenging at times, to make sure his son is getting the best of him. He amazes me and I am so grateful to see the growth in my son as a father as he brings out the best in his 3 year old son.
Brent was nominated by his wife ➞
Brent and I were set up on a blind date by my sister and brother-in-law in 2006. We had a great time. …
He is worth it! Every meeting, every appointment, every therapy session, every insurance battle, every school battle, every service battle… His life has value and he has a lot to say, if you listen with your heart.
Rixon was nominated by his dad ➞
This is my youngest son, Rixon. He has Fragile X syndrome and is diagnosed with autism. One thing I have learned is that he wants to be involved in whatever we are doing. When we involve him, he thrives.
Lorenzo was nominated by his mom ➞
That’s my beautiful son Lorenzo. We are from Belgium, he is 13 years old. Always happy and friendly, he even likes to do photo shoots.
—Natasja (Lorenzo’s mom)
Logan was nominated by his mom ➞
This is Logan 😍. We just celebrated his 14th bday on July 1. If schools ever open up again, he will be in 9th grade and going to high school this coming year. He is 6′ 3″ already. Such a kind, BIG-HEARTED child. He is such an important member of our home! Always worried if his sister and I are OK or if we are in need of “cuddles.” A suppppper people reader. He ALWAYS knows when someone is upset or sad and offers kind words such as “Don’t worry, it will be ok … I promise.”
Laura was nominated by her uncle ➞
“Cousin Laura” is the coolest relative of the FX guys in our big, loving, family!! She takes them on trips, challenges them to explore, teases with them, teaches them, introduces them to her friends and loves them unconditionally. And all because that’s just who she is — a bright, fun, and caring woman. She makes all our lives better and brighter.
Paige & Mae Otterson
Paige & Mae were nominated by their mom ➞
These two girls love their brother and know he’s capable of great things. They will tell you all about how their Fragile X brother is a superhero!
Girius Owen Akkawi
Girius was nominated by his mom ➞
Girius aka “G” is a kind soul who aims to please people. He loves helping and to be included! He’s creative and has the best sense of humor. He’s #Xtraordinary because he has overcome severe self injurious behaviors and is now a role model to his younger brother, Crosby Akkawi.
Crosby John Akkawi
Crosby was nominated by his mom ➞
He is literally the definition of happy! I call him the future mayor of our town because he waives and says hi/bye to anyone and everyone he crosses paths with. He is strong, fast, and adorable! He’s exceeded goals and continues to impress me!
Anna & CJ Galvan
Anna and her son CJ were nominated by Anna’s brother (CJ’s uncle) ➞
If you know of a pair of people who do life better than most, then you probably know my nephew CJ and his mom Anna, my sister. They both embrace each new day as just that, a NEW DAY!
Smiling and living it to the fullest. Spending time together, swimming, reading, or just doing chores. Some days are more challenging than most but, you’d never know it by the smiles they keep on their faces! They are two peas in a pod. This summer, they’ve done science projects indoors and outdoors, gone to the beach, and just laid in bed watching movies! Now these things may not seem #Xtraordinary but they really are! They are because of their immense love for life and each other!
Anna was nominated by her mom ➞
Anna is truly a bright and special soul. She is smart, sassy, and loving. Her amazing tenacity through all of her struggles makes her my ultimate hero. She never gives up, even when frustrated and is constantly reminding me that, “I’ve got it Mommy.”
Nick, shown on TV during Advocacy Days, was nominated by his cousin ➞
Nick makes everyone else’s life #Xtraordinary. Throughout his life, he has smiled. He is the best small-talker I know; I use him as the example for my own Aspie son on how to interact with others. He is an #Xtraordinary advocate for himself and others; the attached photo is from his appearance on TV in Washington, DC, during Advocacy Days. He is a great role model for his brother, Jake, who also has Fragile X, and inspiration for his parents, sister, and cousins, especially me.
Dalia and Jonathan
Dalia and Jonathan were nominated by their mom ➞
They are Xtraordinary because with their beautiful smile they make shine not only the most difficult of my days, but also the ones that surround them.
—Violeta G. Sánchez
Courtney was nominated by her mom ➞
Courtney has one of the kindest souls, unlimited compassion, and always eager to help others when she can.
What makes Jace Xtraordinary to me is that he is completely nonverbal but has no problem letting us know what he needs/wants!
Courtney has one of the kindest souls, unlimited compassion, and always eager to help others when she can. Helping others gives her feelings of happiness and pride. Having others feel proud of her and of her accomplishments, whether they are through acts of kindness or from a drawing she did at her day program, is something that is very important to Courtney. On a daily basis she is persistent in trying to overcome her challenges and become as independent and self sufficient as possible. Of course she has days when she is not as willing to do what needs to be done but, who doesn’t. Knowing how hard life can be for Courtney, my heart often breaks for her because I cannot change the things that make life more difficult for her. Yet, I am always amazed at how she is constantly growing and maturing into the beautiful person who makes my heart melt with pride and admiration. Every time I see her happiness through her infectious smile, I know she is not letting the challenges stand in the way of who she is and of who she is to become!
Brent and I were set up on a blind date by my sister and brother-in-law in 2006. We had a great time. After that night, we called and talked almost every night, and were together every weekend that I did not have Matthew. I wasn’t ready for Matthew to meet him yet. I needed to know more.
But, I could tell that Brent was someone I wanted a more serious relationship with, so I educated him about Matthew, Fragile X, and autism, and the role Matthew will always play in my life. I needed him to know that as soon as Matthew was born, he became my heart, and I plan on him being with me forever, or until I can longer care for him. I never want him going to a group home where anyone off the street could be taking care of him, or taking advantage of him. Matthew is the love of my life and will always be, something all moms know. I have never thought of him as disabled, he’s just my son like any other person’s son.
Matthew is non-verbal, which means he has no words. Sometimes, this is so frustrating for him that he acts out violently. I have been bitten, kicked, head-butted, and pinched, and I needed to warn Brent about these possibilities.
One evening we decided that Matthew and I would meet Brent at a restaurant and see how things worked out. It was cold, so we had on our coats. Matthew and I walked in, and he took Matthew’s hand, led him to the table, and helped him take off his coat. It was at that point that I fell in love with Brent. I could tell in that moment that kindness and thoughtfulness were in his DNA.
Since the early years, Brent and Matthew have grown to be good friends. Matthew trusts Brent more than anyone else in his life, and respects his word more too.
Matthew’s frustrations sometimes led to full-on melt-downs. Now, if you’ve never seen an autistic person have a melt-down, they can be quite scary for everyone including the individual. There is a point of no return for them, where they can’t bring themselves back down.
For example, the last time I took him to get his haircut, which was several years ago, he did not want to be there. For some reason on this particular day, Matthew did not want to have his hair cut. I had been taking him for years. I am still not sure what triggered it, but Matthew started crying, then crying uncontrollably. He started pulling on my arms and really being loud. Then he threw himself into the floor and was nearly convulsing from crying so hard. I didn’t want to leave because I had been told not to give in to him or he would think that by crying or throwing a fit, he would get out of doing whatever it was he didn’t want to do. It was so bad, that the lady getting her haircut told me that she would get up and let him get his haircut, and then she’d let the girl finish hers. It was bad.
I went home and told Brent what a horrible experience we had both had (with the exception of the kind lady wanting to help us). Matthew had cried so hard, he had red spots all over his face and neck a couple hours later. I had a few bruises on me. The next time, Brent took him. He held his hands down while the beautician cut his hair, and talked calmly to him the entire time. Mission accomplished. Brent has continued taking Matthew to get his hair cut, each time Matthew would get slightly more independent and brave. Slowly, Brent could stop holding Matthew’s hands and just stand by him. This took nearly a year mind you. Eventually, Brent could sit in the chair next to Matthew while he was getting his hair cut. Now, years later, Matthew can sit in one chair, and Brent in another and they can both get their haircut at the same time. Brilliant.
This is not extraordinary for MSgt. Brent Schaumburg, but it is definitely extraordinary for most people. Brent has taken tasks such as this upon himself to help a small child learn and grow.
Brent has taught Matthew to put on his own socks. This maybe took Matthew six years to accomplish, but Brent never wavered. He continues helping Matthew learn to put on pants and shirts, shoes and coats. There is no doubt in my mind that Brent’s tenaciousness will prevail, and Matthew will indeed one day be capable of fully dressing himself.
In addition to the help dressing, Brent took on giving Matthew baths and now showers on most days. Some days, now, Matthew and I can accomplish this task together. But there was a day, when for some reason Matthew was not happy about me giving him his bath. He started crying, so I tried to rush through it. He didn’t appreciate being rushed, which I should have known. But he started pinching at me, anything he could grab ahold of, he was going to pinch it or scratch it. One I didn’t see coming landed hard on the tricep. I screamed STOP PINCHING ME!! Oh boy, talk about waterworks from both of us after that. I knew better than to yell, Matthew has more sensitive hearing than most people, and he doesn’t want to upset people either. We both ended up getting through it, but the next night, Brent said, “Come on buddy, let’s take a bath.” And Brent took over most nights since then.
And it’s not just Matthew that he cares for and is thoughtful about. He used to have most Mondays off while in the Air National Guard. On that Monday, he cleaned the entire house, did all the laundry (including putting it where it belongs), grocery shopped, and put the food away!
We recently moved to KY, but lived in Indiana. And we had Matthew in Special Olympics for equestrian. He really doesn’t show much interest in anything, but he has always loved to ride horses. Brent immediately jumped on board with the equestrian program, helping not only Matthew but several other athletes before and during the games. He also went to the games early to help set up and tear down, which is a whole other adventure when dealing with horses. Washing horses before, cleaning stalls after for example.
He is a gift to me and my son. He was taught by a loving mother and father.
His mother was dying from breast cancer in the winter of 2014. He was three hours away but felt compelled to take time off work and spend time with her. He ended up taking care of her, along with one sister-in-law, for about three weeks until she passed away a couple days before Christmas. The last week, he took care of her every need.
His father was diagnosed with breast cancer this past December, and felt very weak during his chemotherapy treatments. He’s a farmer and couldn’t get his equipment serviced and ready for plowing, tilling, and planting. He would attempt to work, but within half an hour or so, he had to go back inside and rest. As soon as Brent found out, he made arrangements to spend a week up there to help him. He serviced every piece of farm equipment his dad had, and his van, before he came back home. In that same time, Brent was having serious pain up and down his right arm. That didn’t stop him. After he came home, he found out that he had a torn tendon in his elbow. He had to have it surgically removed, and re-attached to the bone, and was put in a cast for healing.
Even in that cast, he was more help to Matthew, me, his family, and his country than any other man I know.