Strong Families and Orphan Diseases By Gabby Friedenthal

I loved Keely’s mom for years without even knowing her. Or more aptly, I loved the woman behind the email address keelyrocks@…..As I’d browse the El Marino yahoo group’s site for memos to room parents, or the latest discussion on healthy food, or when to turn in your orders for the gift wrapping drive (one of the top revenue makers of the whole year), I’d see it…..”keelyrocks@…” Without fail, I thought…..…”I like this Mom ….whoever she may be. I like her cyber calling card, shouting out proud and loud to the world, “I am so stoked (happy) to be Keely’s Mom!”

I couldn’t have said it better myself – that I am constantly awed by my children. And yes, ultimately, even when the going gets tough, motherhood has made me a better person. The fabulous word “rocks” – it will forever sing to me and be my most favorite of words. Because surely if Keely rocks her Mom’s world, then Keely’s Mom can relate to how gnarly or awesome or lame or bitchin’ or just plain old trippy parenthood can be.

Maybe it’s just me and my unceasing curiosity about random things, but I had a similar experience with another email address: theromeros@….. Some serious psychic wondering went down every time I saw it: theromeros@…. “Which Romero is this? The 2nd grade teacher? I thought her name was Maria not Laura? Maybe it’s another Romero? Who are her kids? She sure posts a lot about Spirit Wear. What is Spirit Wear exactly?………. and why do they call it Spirit Wear?………… and why is she so damn gung ho about it?”

It turns out luck was on my side. In the last couple of years I have had the privilege of meeting the two Moms behind these email addresses.

Keely’s Mom is the blonde, California casual, stylish one and her name is Alisha Martin. She is always warm and friendly and started saying “”hi” to me simply because we crossed paths every day (there’s that Crossroads thing again) I love people like that!

I quickly learned that Alisha is not only a nice person, but grounded and giving. She’s one of those uber parent volunteers working in multiple capacities- most noteworthy, as the chairperson of one the biggest fund raisers for El Marino, the gift wrap drive. She also planted, all by herself, a backyard worthy of a Sunset Magazine garden of the year award. Her most important job, however, is to support, love, and take amazing care of Keely, her nine year old daughter (named for Keely Smith, the Jazz Singer) who was diagnosed with cystic fibrosis (CF) when she was only four months old.

Alisha and her husband Victor have a big job. Cystic fibrosis is an inherited disease that causes thick, sticky mucus to build up in the lungs and digestive tract. This collection of sticky mucus results in life-threatening lung infections and serious digestion problems. Fortunately because of advances in medicine people with CF are living longer and healthier lives (the average life span for someone with CF was 37.4 in 2008 up from 30 in 2000) but there is still a tremendously long way to go.

And the story about the other e-mail Mom? I met Laura Romero of theromeros@ outside Room 16’s Kindergarten class. There, on the patio, sit three large, round, eating tables. I’d find Laura every day at drop off wiping these outside tables and chatting away. First off, she was not Latina as I had suspected. In fact, she was a red headed chick who looked like she’d gotten off the plane from Ireland just yesterday. As I say, Laura is friendly, so we got to be friends. Her openness about most things gave me the courage to ask her something I just couldn’t figure out. “Dude” I said in my most eloquent of ways, “you take on the mammoth job of not only being room parent and Spirit Wear Chairperson, but of cleaning the picnic tables for our class EVERY morning. (If she wasn’t there, then her husband Jorge was there to make sure the job got done.) Why?” This is the day I learned about Caroline’s disease. Caroline’s world needs to be as clean and germ free as possible because even a runny nose can be devastating to her system. Caroline has Minimal Change Disease, a very rare form of kidney disease that causes Nephrotic Syndrome.  Many diseases can cause Nephrotic Syndrome (diabetes, lupus…), which is the swelling of the body when the kidneys do not filter properly. In Caroline’s case it is Minimal Change Disease.  It is so rare that there are no medications specifically for this disease (it borrows meds from other diseases such as cancer) and there’s very little research. Caroline, like Keely, must follow a strict diet, be excessively careful about germs, and take medications that are almost as bad as her disease.  They deplete her immune system, stunt her growth (she hasn’t grown in over a year), impair brain development and weaken her bones. You’d never know that Caroline has this disease let alone any disease. Keeping her free of colds and flu allows her to take a more minimal dose of her meds, thus less intense side effects. Caroline is bright eyed and cheerful, intelligent, funny and caring. Seeing Caroline you’d think the sun shines in the most perfect of all ways just for her.

As fate would have it, Alisha and Laura are dear friends, and have been for years. In fact, Keely and Kate, Laura’s older daughter, have been buddies since toddlerhood. Because Keely was diagnosed with CF when she was only three weeks old, Alisha explains: “All we know as parents is a life with a child with a chronic disease. We don’t know any different.” So when Laura and Jorge got Caroline’s diagnoses, the small blessing was that Laura had had a mommy friend who understood firsthand what it meant to have a sick child. As Laura explained to me, “It’s a whole different ball game when you have a kid with chronic health issues. It’s like parenthood – you can’t understand it unless you’re in it. Add a life-threatening illness to the picture…..and there are hardly any words to describe it. All I can say is it is extremely helpful to have a friend who is also parent and understands what an intense journey this is.”

Both Moms keep it positive because, well, they are moms. And Moms know there’s really only one choice when adversity comes knocking….face it with the biggest smile you can muster – if not for yourself then for your child. Keely is in fact her doctor’s poster child. Because of her parents amazing care, she wows her doctors with her healthy, happy, and active lifestyle. Alisha and Victor are proud to report that “although Keely has always had an incredibly difficult thing to handle, she is one of the brightest, happiest, mentally well children we know.”

Laura also believes that attitude is important. “We take it day by day. Today is a good day! And it certainly has helped us keep our priorities straight. My hope is that maybe something positive will even come out of Caroline’s experience. “ When all is said and done, though, she’s a Mom, and has to add this important afterthought: “every day, I think to myself, I’d so much rather it be me then her having to go through it.”

I spent the day before Mother’s Day at Laura and Alisha’s annual garage sale. They’ve been doing it every year for the last five years to raise money for the Cystic Fibrosis Foundation. Laura told me “we felt this garage sale was a good way to raise money for the CF foundation. It’s a win-win for everybody: we let our friends and family get rid of their unwanted stuff while helping us to raise more money than we could donate ourselves.  This year we decided to add Nephcure to the donation list because we are starting to get more involved with this foundation.” This is not the only fund raiser the Moms participate in. Every year they participate in the Great Strides walk-a-thon to help raise money for the Cystic Fibrosis Foundation. In her annual letter to ask friends and family to support the walk Alisha wrote “Keely looked up at me and asked ‘Am I going to have CF forever?’. It broke my heart. I told her that there will be a cure. So it’s another year and team “Walk4Keely” is raising money to find a cure for CF so Keely can live to be 100!”
Why is the walk so important? Because donations are the ONLY way to find a cure for cystic fibrosis. Pharmaceutical companies will not spend money on research because it’s considered an ‘orphan disease’ – not affecting enough people to make lots of money on drugs. It’s much the same for Caroline’s disease. Research to find a medication to help cure these diseases may not be on the top of the priority list for the drug manufacturing companies, but for the Romero Family and the Martin family, a cure for these orphan diseases can mean life or death.

I wanted to get this article written and published before Mother’s Day. I was too busy being a Mommy for it to happen. But then, thank god, I had an “ah hah” moment. First off, you can still go the the Nephcure site and make a donation in Caroline’s honor. Or, there is still the Great Strides Walk to help raise money to find a cure for cistic fibrosis. It will take place in Santa Monica on Saturday, May22, 2010. There’s still time to donate – so for Caroline and for Keely, please do! I know I am going to! Here’s the link for the Walk: To make a donation: http://www.cff.org/Great_Strides/VictorMartin . To join Team Walk4Keely: http://www.cff.org/Great_Strides/VictorMartin. Here’s the link for Nephcure: http://www.nephcure.org/

Secondly, Hallmark’s claim that Mother’s Day is only to be celebrated once a year is rather weird. …considering the two Moms I’ve had the chance to write about. These two Moms deserve weeks, months, years even, of gratitude and celebration for who they are and what they do.

The picture that you see attached with this article is a picture of Keely with her Dad. Unfortunately Caroline was off with her dad and sister so I couldn’t get her picture. So, help me out – if you will, and imagine this picture with Caroline standing right next to Keely, the two girls arm in arm. Both these girls are beaming because they are well loved, well cared for and well celebrated. From their smiles and the self confidence you can surely see that they (and therefore their Mommies) really do ROCK!