Rare. It means something that doesn’t occur often or the alternate definition (which I prefer) is something remarkable. When our daughter was born sixteen years ago, she emerged into this world fighting and early with bright red hair. We wished for a redhead because we have the gene on both sides, but sadly less than 2% of the world’s population have red hair so we thought it impossible. It wasn’t. Even more rare? The fact that our Ginger has blue eyes. Only 1% of all redheads actually have that combo. She’s beautiful.
We now have a gorgeous young woman who graces our presence every day. Our little girl, who was the princess of our home for years with all the shoes, dresses and manners to prove it, has grown into an amazing young lady. Unfortunately, just like the genetic combination she was dealt with at birth with her red hair (it’s a mutation), we’ve learned recently that we lost the genetic lottery in other places. And, if it’s something that is rare, our teenager is bound to have it.
We started with chronic migraines. One out of one hundred kids have intractable migraines like our daughter. The same statistical numbers apply to POTS, which she also has. Rosie also has PLEVA, which I can’t find any stats on but know is rare because when she was diagnosed the entire dermatology department came in to see it and snap pics. Most recently, our daughter was diagnosed with Ehlers-Danlos Syndrome. We were just getting comfortable with that rare diagnosis when she started vomiting almost three weeks ago as we were starting comprehensive testing for a treatment plan. After five days of not keeping anything down, we went to the emergency room. We’ve been in the hospital ever since.
How rare is too rare?
That’s the question that’s been on the top of my mind lately. Not only does our teen have all of these rare conditions, she has all kinds of drug allergies and adverse reactions. When I talk to doctors about any of her symptoms, it’s usually prefaced by, “well we don’t do anything normally.” Everything we’ve done for sixteen years is rare, including what’s happening now. Rosie has Superior Mesenteric Artery Syndrome.
Don’t know what that is? Don’t worry. Neither did half our nurses and I bet it’s the residents’ first glimpse at this. We hadn’t heard of it either however, when your child hasn’t been able to keep any food or water down for over two weeks and is now being fed through tubes, you jump at the chance for the ultrasound to see if that’s what she has. Essentially, all of Rosie’s abdominal pain is real (thank you finally for the justification that it’s not “just pain.“) The duodenum (the first part of her small intestine) is compressed between two arteries and is partially blocked. Once diagnosed, they moved her NJ tube down below the site and she’s starting to show a little progress. She’s been able to keep some water down.
I have to give a huge shout out to the Purple Team at Children’s Mercy Hospital. We weren’t diagnosed by a specialist. An attending (I think and if I’m wrong I’m sorry because I want to give you credit), woke me up at night to ask if we’d been tested. She was looking at Rosie’s growth charts and all the symptoms and this was the only thing that fit. God bless her and the entire team. We know that the road back from this is slow and we’re reminded of that daily. I’d be a liar if I didn’t confess that not only are we both sick of the hospital, we want someone to wave a magic wand and make it all better. It’s not going to happen soon.
Thanks to everyone who’s been not only following our story but has reached out to us with lots of encouragement and support. We are blessed to know that while everything we have going on is rare, we are never alone.
Thank you to Lori Habiger of Center Stage Photography for this amazing image.