The Huffington Post recently devoted time with my family to fully understand our daily struggles as we battle a rare disease to save Maxwell.
The journalist and photographer deeply cared about Maxwell and felt our sense of urgency as we frantically race to develop a gene replacement therapy for Maxwell before it is too late.
They witnessed the exhaustion and tears of leading scientists while trying to raise upwards of $1,000,000.
Our email communication included many 2am time stamps and phone calls where I was slurring my words from an all-nighter. Not to mention doing all of this while caring for two-year old twins that need a semblance of a normal childhood. I cannot allow “this” to detract from their beautiful lives. I try to make Maxwell’s 12+ thera\py sessions a week enjoyable even though it’s physically and mentally straining. And then there is Riley, Maxwell’s sassy pants twin sister who deserves time focused on her specific needs. She cannot fall into the forgotten child category.
This is not easy and I wouldn’t wish it upon anyone. In fact, I am working day and night to ensure there is not another Freed family.
Thank you to the HuffPost for your beautiful coverage of our little family in a big fight to change to this world.
On a funny note, The Huffpost published this picture of me taking a rest. Please read our story below.
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