I am writing with a heavy heart to share the story of a dear friend of mine with an 8-month-old son who is going to die before his 3rd birthday from a rare genetic disease called Menkes Syndrome, also known as “kinky hair syndrome.”
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.
Mary created a CaringBridge page 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 here 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 Teddy's story deserves to be shared.
Thank you for your support!