I don’t do this often, but I’m coming at ya with a different tune today, friends. I received an email from Alex, a blog reader (and blogger), that truly stopped me in my tracks. She shared a story that saddened my heart and she simply just asked that I share it with you all. Alex’s dear friends have a beautiful eight month old son who was diagnosed with a rare genetic disease called Menkes Syndrome (also known as “kinky hair syndrome”). According to previous cases and research, this sweet boy won’t live to be three years old. The strength of this family is immeasurable. It humbles me.
Here’s are Alex’s words…
“On November 14th, Mary and Alex Fish were given the most devastating news a parent could ever receive: their seven-month-old son, Theodore, who is affectionately known as “Teddy,” was diagnosed with a terminal syndrome called Menkes. Menkes Syndrome affects approximately 1 in 450,000 male babies. There are currently only a handful of documented cases in the entire United States that specialist, Dr. Stephen Kaler, is studying at the National Institute of Health.
Her answer every time to the question of “What Can I do to Help?’ is “Spread the Word,” So, I am reaching out to you in hopes that you will help me spread the word through your blog to create awareness about this rare syndrome that receives little to no medical attention or research funding. Your blog is exactly the audience who needs to hear Teddy’s story.
Mary created a CaringBridge page (http://www.caringbridge.org/visit/theodoreteddyfish) as an outlet to both update family and friends about Teddy’s health and to spread the word about a relatively unknown syndrome, which currently has no cure. Their journey is documented almost daily by journal entries written by Mary, who as you will quickly learn, is an incredible mother. Every entry she writes is a reminder of what it is to be truly selfless, acting with only your child’s best interest in mind. Teddy was dealt the most unfair hand, but he is so lucky to have quite possibly THE most amazing parents.
Teddy’s story may not be able to save other babies who currently suffer from Menkes, but it could create awareness and eventually lead to a cure. It could also empower mothers to trust their guts when they know something isn’t right. Because the syndrome is rare, many doctors dismissed her concerns about her child’s symptoms (such as distinctly kinky hair) because they lacked knowledge of Menkes.
If you could please take a moment to visit Teddy’s Caring Bridge page at http://www.caringbridge.org/visit/theodoreteddyfish you’ll see pictures of sweet Baby Teddy, Mary and Alex and can read Mary’s updates on their daily life and Teddy’s health. You’ll see why her story deserves to be shared. “
Talk about a sweet friend to reach out on behalf of this family. On top of that, Alex set up an online fundraising site a little over one day ago (at the request of other friends and family) to help offset medical costs. In just 24 hours, it has raised almost $6,000! If this story has touched you, please feel free to share it on your own blog/social media site or help donate here. Please join me in praying for not only this family, but for the strength and peace of all who are undergoing such an unfair fight.