What would you do if a trusted physician told you there was no hope for your child? Would you accept his fate or would you insist on more? I have to admit, I’m not sure I would have the confidence in myself to challenge what the experts were telling me. Would you? One mom did have the confidence. Last March Amber Freed was told that one of her twins, her son Maxwell, had a rare genetic disorder that would deeply affect his development for the rest of his life. They told her that there was nothing that could be done to stop what was happening to him. But, this mama refused to accept her son’s fate and she did more.
Immediately, Freed went about searching for a cure, or at least someone who could create one. She did multitudes of research until she came across a possible treatment through gene replacement therapy. Now that she had a plan, she needed a scientist to execute it. In three months she spoke to 140 scientists and finally landed on Dr. Steven Gray, a gene-therapy specialist at the University of Texas Southwest Medical Center. Securing his services was no easy task, but a very determined Freed made it happen. She had her scientist and her treatment plan, all that was left to figure out was the money aspect. How were they going to pay for this million dollar treatment? This, my friends, is where you come in.
Amber Freed is one of us. She has been a member of FIT4MOM Greater Denver since 2017. When one of our own needs a hand, we give her a thousand!
Freed has said that through FIT4MOM, “I have found the community, sunshine and physical workout improve my outlook as a mother and person. One lesson I have learned repeatedly through our journey is that I must be healthy and happy for my twins to be healthy and happy – even in tough times.”
You can read the Freed Family’s full story here, and visit MilestonesforMaxwell.org for more information about Maxwell’s faulty SLC6A1 gene. While there, please consider donating to this incredibly worthy cause. This treatment will not only save Maxwell, it will save every person with this disorder. As scientists have found that this disease is a Top 10 leading cause of autism, epilepsy and psychiatric disorders, it is so important to fund the research that can cure it.
Freed explains her instinct to fight like this;
“I am a spiritual person and every instinct in my body told me to fight. I have found that parenting is 99% instinct and if there is one point I could tell other mothers – your gut is right and never stop listening! I knew that nobody could advocate for my son like me, so I had to become the expert and be his voice.”
This is all I needed to hear to believe that even if I might not have had the confidence to question in the past, I do now. We are truly the voice for our children. If we don’t speak up for them, who will? Freed’s strength and perseverance is awe-inspiring and I hope you all take something from her message just like I did. As Freed says, “Moms are change agents for the future!”
Come join us for a benefit class for Maxwell on Friday April 12, 2019 at 930am. The class will be held at Wash Park. And proceeds from all the classes held in the Greater Denver area that day will be donated to Maxwell. Click here for event information.