Ever-so-often I get emails like the ones below. They hurt my heart so badly, but of course I want to share here on my blog. It truly is one of those things that I pray can save a life. Even just one. Rare things are real.
When I get an email saying that a pulse ox test saved a baby’s life and it was requested after reading about it on my blog or another one that shared about it, I can’t help but thank God. I certainly didn’t save any lives, but this blog that acts as my platform hopefully helped. Which, let’s face it, I might not have ever even posted about a pulse ox test had it not been for Cohen and what we’ve been through.
Anyways, I’ve always I think it’s so admirable to have a friend that fights for you and wants to do everything in their power to ease your pain.
A sweet lady named, Morgan, emailed me about her friend, Mary. Morgan is also a mama to little ones.
“On November 14th my dear friends, Alex and Mary 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 an extremely rare and 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 Institutes of Health.
Within four days after returning home from a week of isolation at the Fairfax Children’s Hospital, Alex and Mary made the decision to take Indefinite Leaves of Absences from their highly respected careers, pack up their essential belongings, and move back home to the Boston area to spend the rest of Teddy’s life surrounded by their extended families. Their house has since gone on the market and friends in the area are patiently waiting to pack up the remaining boxes and furniture for them.
While this incredible family is going through an unimaginable time, they have had wonderful friends there to support them in any way possible. Running errands, preparing home cooked meals, and donating Baby Teddy’s formula that he can no longer eat since he is fed through a feeding tube now, but most importantly simply being there and listening.
While Mary and Alex have moved to back to Boston, I sit here from afar trying to help ease the pain and turmoil that this family is facing. With multiple doctors and/or specialist appointments nearly every day, the money this couple has been saving for 7 years is rapidly depleting. To help with this, an account has been established in Teddy’s name where friends and family are able to donate. I hope that you will encourage your readers to add Mary, Alex, and dear Teddy to your thoughts and prayers, and if possible, make a donation to help Alex and Mary make the days of their little boy’s life comfortable and loving.
Mary has created a CaringBridge page as an outlet to both update family and friends about Teddy’s health, and also to spread the word about a relatively unknown syndrome which currently has no cure. 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 by using your blog to create awareness and help this mother in the crisis of her life.
The Fish family’s story 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 to me what it is to be truly selfless, and to act with only your child’s best interest in mind. She is unapologetic and honest about her feelings and her experiences. Teddy was dealt the most unfair hand, but he is so lucky to have THE most amazing parents.
I originally began sending this letter to friends, family, and strangers in order to support a family my husband and I love so much, to aid Mary on her mission to educate people about Menkes, and because I love this little boy so incredibly much; but Mary’s journey, has become so much more to me. It is about following your motherly intuition, about taking your child’s health into your own hands; she is her child’s BEST advocate. Mary knew her baby was sick and the answers doctors gave her were not sufficient enough to ease that nagging feeling that something wasn’t right. “Be patient. He’ll outgrow it.” Every first-time mother has heard these words, but still, Mary knew in her mother’s heart that all was not right with her precious boy. She persevered. And although the answer was devastating, it reminds me that in many cases, “Mother does know best.”
Teddy’s story may or may not save other children from going undiagnosed by this incredibly rare disease, but it could help many mothers to become more empowered, more willing to speak up and to question — to assure them that they should trust their gut and their instincts. It is always okay to ask for a second opinion. This message is laced into her journal entries.
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, Alex, and Mary, and can read Mary’s updates on their daily life and Teddy’s health. “
I’m so glad Morgan emailed me.
I can’t imagine. It’s hard to ever prepare yourself to have to say goodbye; to know it’s coming. Unfortunately, I do know that first-hand. I do think it’s a miracle that they are able to see Teddy’s sweet smile, as the doctor said it’s extremely rare that a baby with this syndrome smiles at all.
I think it’s amazing that people all over the world have “joined” Team Teddy. It help spreads the word about this awful syndrome, that can hopefully one day be treated, and I know it has to bring such warmth to Teddy’s family.
Thank you for reading!