A fellow blogger, Alex, emailed me a couple days ago sent me the following email. What she wrote just devastated me. But instead of forgetting about it I decided to share it with you all in hopes of raising awareness of Menkes Disease. If this ever happened to one of my children I would want someone to do the same. Get out your tissue...
Alex writes:
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. 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.
Thank you for your
support!
Alex
I hope this encourages some of you to check out his website. It definitely did for me and as a mother I think it is important to educate yourself on things that could affect your child. Give your kiddos extra kisses today and always! I sometimes forget how blessed I am to have a child who has tantrums and bad days because in reality it's another day I get to spend with her and not everyone else is so lucky.
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