Eppie, shown with her son, was nominated by her husband ➞
The way she cares for both of our boys (both full mutation FX) and our daughter (not FX) and being the best mum they could ask for!
Jen was nominated by her friend ➞
Jen is a huge support to our entire Southern California Fragile X community. She never stops giving of her time and support. She brings us all together for family fun days, education events, Fragile X 5K (8 years and counting), online support groups, and friendship. My life, and my FMFX son’s life is so much better because of Jen.
Reuben, shown with his brother, was nominated by his mom ➞
He is super funny and loves his brother.
Marcae was nominated by her husband ➞
Marcae is there for Hope all the time. She has willingly put her life on hold for years to help Hope continue to see goals met and Hope move forward. Marcae was a special needs teacher before Hope was born, so she had a heart for special needs children. Moving from teacher to full-time parent was a great sacrifice, but Marcae has continued to step up over and over.
Deby was nominated by her sister-in-law ➞
Deby Burgess is the world’s greatest advocate for Fragile X. Her son John David has Fragile X syndrome and since his diagnosis when he was a baby, she has immersed herself in the Fragile X community, gathering all the information available and sharing this information with anyone needing it. She has been a wonderful source of comfort and information to many, but especially to our family as our daughter is a permutation carrier. Deby has worked hard on Becca’s behalf to make sure she is as informed as possible. Giving her hope and comfort. Deby Burgess is absolutely one of the most Xtraordinary people I know.
Andrew & Tammy Selinger
Andrew and Tammy were nominated by their cousin ➞
For 25 years Tammy and Andy have put 110 percent of their energy into learning and advocating about Fragile X. They have built a huge chapter in Hartford, fought for and obtained excellent programming for their children and others, raised funds for research, all while demonstrating love to everyone they touch. They have met with politicians, held conferences, and met with families to help them through the navigating needed with a special needs child. I am truly amazed by their energy and can’t imagine anyone is more deserving than them.
Missy was nominated by her daughter ➞
My mom goes out of her way to help so many people. She is constantly working past normal hours to get everything done and perfect. She has taught me and my family so much about Fragile X and continues to inspire us all to be better people!
Tammi was nominated by Joey Gerardi’s mom ➞
As many of you may have seen, she was featured in Determined Life–Joey Gerardi, his “movie” on YouTube in 2009, and she still is with him today.
Crystal was nominated by her mother ➞
Our daughter at 29 years old gave birth to what seemed as a normal boy.
He’s my 6-years-young grandson. Nothing can separate us. Brody is truly my Guru.
Anna was nominated by her mom ➞
She is exceptionally kind, empathetic, funny, and sassy. She has worked so hard with all her therapy and schoolwork. There were some bumps, but my daughter graduated from elementary school with being almost fully mainstreamed in her classroom. I am so proud of her and how far she has come.
Mauricio Jose Bishoff
Mauricio was nominated by one of his clinicians ➞
He is a Fragile X chef, he paints, he can handle a buffet for 300 people.
Katie was nominated by the mother of one of her students ➞
Mrs. Matthies has been my son’s teacher in his life skills class for the past four years. …
Frank, shown with their four children, was nominated by his wife ➞
He is the step-dad to my two older children and my 17-year-old has Fragile X. Then came our two and the youngest, who is 3, also has Fragile X. He is the step-father he doesn’t have to be and the father he’s grown to be. He loves these two unconditionally and doesn’t have to. His heart is always in the right place and for that I feel he is extraordinary because having two children with Fragile X is a lot, but with him, life is just perfect.
Natalie was nominated by the mother of a young boy she babysits ➞
Natalie came into our lives just over a month ago. She has formed a relationship with my son who has FX syndrome. She took it slow and let him lead the way! She has been a life saver for our family!!!
Jayne was nominated by her sister ➞
My sister Jayne is Xtraordinary to me in so many ways. …
Dr. Avni-Singer is a Developmental-Behavioral pediatrician. He has known Wyatt since he was almost two-and-a-half years old. We met with him twice to share Wyatt’s history (at age 2-1/2 his medical file was about 2 inches thick) and then he met Wyatt. Wyatt was cooperating and it was safer to have him on the floor, Dr. Joe sat down on the floor as he played with Wyatt, asked us more questions, and examined Wyatt. It set the tone for the rest of our relationship.
He is the one who diagnosed Wyatt with Fragile X and had us do DNA tests. Since then he is Wyatt’s champion. We’ve had to fight for services medically, educationally, and for the home. He sends us research and he reads the research we send him as well. He knows Wyatt. Wyatt has multiple needs with autism, Fragile X, anxiety, being non-verbal, medically, behaviorally, and cognitively, but more than that he sees Wyatt’s personality, his problem-solving skills, how vocal he is and how sassy he is.
He sees the loving boy underneath the layers and advocates with us for whatever Wyatt needs. What will make Wyatt his best self. He is encouraging, enlightening, and compassionate. He’s seen him at his best, worst, and his sickest, and his support is priceless when you’re in the trenches. We are so blessed to have him as Wyatt’s doctor. I can’t imagine where Wyatt would be without him.
Our daughter at 29 years old gave birth to what seemed as a normal boy. Not long afterwards something seemed wrong.
As a baby he was diagnosed with Fragile X. The doctors told her he wasn’t born with an owners manual. Since then she and her daughter were diagnosed as carriers. She did all the research and now has a very happy, smart little boy. She homeschooled both children and helped my husband to find out that he also is a carrier. She helped me know what we were about to face with my husband. He now is on disability and is seeing a new life that we never knew existed. She saw all the symptoms before we knew anything was wrong. She helped me prepare for the unknown.
She takes each day as it comes, plans their vacations so Jared can have time to rest. She finds toys made for a Fragile X little boy, it’s amazing to see what he gets at Christmas. Jared has exceeded the doctor’s expectations. He’s able to do things they said would never happen. Crystal is one of the most dedicated moms I’ve ever seen, Jared doesn’t know he’s a special needs boy, whatever he wants to do he can with her guidance and encouragement.
I’m so proud to say she’s my daughter and they’re my grand-babies.
Married me 5 years ago. Mallory was 19 years old. Has thru example, patience, love, understanding COMPLETELY changed Mal’s life.
Mal was finished with high school, had very little daily activities, unhealthy eating, literally laying in bed most days (her bed became concave from her constant laying down), 24/7 on her social media.
Barb loves to exercise, cook healthy meals, is a problem solver, and a doer.
Mal has lost 20+ plus lbs. (we prefer to gauge progress by being healthier, not weight), primarily by mimicking what she watches Barb doing … walking, gym exercise, smaller portions, water instead of sugar drinks, etc., etc.
Barb has introduced and fostered a love of sleep-away camp for 3 weeks in the summer, volunteering at the old age homes to assist with activities, working for pay at Panera’s washing dishes (which she loves, making money and making a difference), to teaching Mal empathy, generosity, and feeling good about herself!
My sister Jayne is Xtraordinary to me in so many ways. Jayne has devoted her life to her son, Ian, and Fragile X.
First and foremost her outstanding love and care for her son Ian. Jayne defines patience, unconditional love, and perseverance. I know there are wonderful days and there are hard days. But, Jayne knows that structure and organization are key to Ian’s success. She and her husband are the heart and soul of Ian’s kindness and generosity. Because of Jayne’s inclusive spirit, Ian is well known to the Boulder [Colorado] community. He has many friends in the fire department (his favorite), at CU, King’s Super, mail carriers, and garbage collectors. Ian is always looking for his friends to give them their favorite drink.
Jayne’s other Xtraordinary quality is her dedication to Fragile X. Jayne works with so many families on their journey into the Fragile X world. Families with new diagnosis are going through a range of emotions and Jayne is there to support them through every step of the way. This is a perfect role for her. She is living it with her son, she has a strong rapport with the Fragile X team, and she is constantly researching and looking for ways to improve the quality of life for those affected by Fragile X.
As a young girl growing up in Kansas City, I know Fragile X was not part of her future plans. But, in true Midwest fashion, she took the bull by the horns and faced it head on. Jayne doesn’t look for sympathy, she looks for the next adventure with Ian.
Love you Jlizabeth!!!
Mrs. Matthies has been my son’s teacher in his life skills class for the past four years. She is in constant communication with me not only about any concerns but also his growth. She has developed strategies for Michael to overcome his severe anxieties. Michael was not fully toilet trained when he entered her class in sixth grade and now he takes care of his self-care needs himself. He had difficulty transitioning from his room to specials and the lunchroom. This year Michael was able to go out at recess and play soccer with his typical peers. She would visit him at his day camp and help with strategies to make camp a rewarding experience.
Without Mrs. Matthies, love, concern, and knowledge Michael never would have made the amazing strides he’s accomplished.