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Posts from the ‘Ichthyosis Human Interest’ Category

Can Reality Outshine our Wildest Dreams?

On any given day, Amy and Andy Coolidge of Frisco, Texas, can be found sprinting from one doctor’s visit to the next, while keeping up with life’s never-ending demands and “multi-tasking to the max.” Yes, they are a married couple in the middle of their lives. Yes, they have jobs, housework, finances, and errands to run. And, yes, they are raising three young children.  However, the Coolidge’s are juggling just a bit more than most – as each of their three children have special needs.


Their children, Chase, age 8, Madison, age 12, and Drew, age 14, are all affected with the rare disease, Trichothiodsytrophy, also known as TTD.  According to Dr. John DiGiovanna of the NIH, “TTD is a rare autosomal recessive disorder that is characterized by brittle, sulfur-deficient hair, short stature, and multisystem abnormalities. Patients may have exaggerated sensitivity to sunlight (photosensitivity), developmental delay, recurrent infections, and ichthyosis.”

Mom Amy says, “Trichothiodystophy affects all of my kids differently.” Madison has Primary Immune Deficiency, a condition which weakens the immune system, allowing repeated infections and other health problems to occur more easily, and Neutropenia, an immune deficiency which presents as an abnormally low count of neutrophils, a type of white blood cell that helps fight off infections. Chase also is immune deficient and has most recently been diagnosed neutropenic as well.

And yet, even while faced with these extraordinary challenges, the Coolidges greet each day with hope, energy and grace. They are bound and determined to make the very best of their situation and the very best lives for their children.310

“These kids are amazing, challenging, daunting, and inspiring,” says Amy.

”People stop us at the grocery store, at school, and in restaurants to comment on how much joy our kids bring them just by seeing them, knowing them, or talking to them. Every day brings a new emotion. Some days it brings happiness, some days it brings fear; but every day brings knowledge. We learn something new about Trichothiodystrophy and ichthyosis every day.”

But on one particular day last February, they were greeted with something a little more – a stroke of magic, courtesy of the Make-A-Wish Foundation.

IMG_4384They were informed that Make-A-Wish would not only be sending them on a spectacular trip to Disney World, for seven days and seven nights, but the local Dallas Make-A-Wish chapter would also be granting the “firefighting” wishes of  little Chase, making him an honorary firefighter for the day. “He got his own bunker gear. He flew in the Care Flight helicopter, and they even had him put out a fire and rescue someone!” said Amy as she described “Fire Safety Town,” equipped with “mock” rescue operations.

“To see your son, who goes through a lot, doing something he really wanted to do is truly a blessing,” added Chase’s dad, Andy.

But the dream didn’t end there. Madison, now an official “Wish Kid” was also asked by fashion designer Loren Franco to participate in a fashion photo shoot!

“Madison was so excited, she had never done anything like this before.”IMG_4820

The photos were stylized as “dream like” fairytales with Wish Kids strolling through a sunny meadow, wearing dramatic, flowing dresses. But not just ordinary dresses, these were Loren Franco originals, and by that, of course, means they were born from the imagination and crafted of “the unexpected” – more precisely…the were made from real parachutes!

The photos will be featured in upcoming promotional materials for Franco’s “Reaching for the Stars” fashion show scheduled for September 20, 2014, where she’ll introduce her latest line of art-inspired fashions and accessories. The cat walk will be graced by the Wish Kids themselves.  “Madison and a few other Wish Kids were also asked to be a model in the fashion show in September. It’s like this wish never ends!” added Amy.

So, yes, for this special family…reality shines on. Stay tuned.


Do what you love and your skin will follow.

As many of you affected with ichthyosis already know, at times, this condition can present enormous challenges. And yet, as many of you also know there are still other times when ichthyosis is simply a background hum to the music of life.  Member Brian Gass, affected with CIE, is living, walking, and hiking proof that although his ichthyosis is a part of his life’s journey, it follows his lead, trailing far behind his pursuit of passions, dreams, and interests.

Recently Brian contacted us to let us know he’d be doing a little traveling this summer. Well, actually a lot of traveling – 2,650 miles up the spine of the Sierras from Mexico to Canada, to be exact. Although he is an avid hiker, racking up “over a thousand trail miles on three continents,” this journey will prove to be a journey of his lifetime. And for the benefit of others affected by ichthyosis who share in his love of the outdoors, periodically throughout the summer he will be reporting back to FIRST and on his blog:   (http://hikeonthegoodfoot.blogspot.com/).  Not only will Brian be sharing an up-close view of the most breathtaking terrain, but he will be sharing everything he learns and experiences about the care and safety of his skin along the way.

We are happy to share Brian’s mission and his message: do what you love first and your skin will follow. 

Here is a personal note from Brian with more information regarding the details of his upcoming adventure.

From Tea to Transformation #FIRSTPhantomTea


by Mo Neville
Last year, at this very same “Phantom Tea” time of year, I shared an article I had written in 2011 regarding a life-changing moment that occurred while sharing a simple cup of tea.  This year, as we gathered in a circle at our conference table, detaching from our computers (if only for a few hours!) and assembling the Phantom Tea packets, I was once again reminded of the importance, power, and warmth of a simple human connection.

It seems the basic notion of smiling at someone, making eye contact, or just saying hello, actions so uncontrived they are hardly spoken of, have become effortful, and sometimes, in some lives, even obsolete. So much so, that some of the world’s most influential people are joining together to stop the spreading of isolation and loneliness. It is no wonder that media icons Oprah Winfrey, Gayle Kine, and Sonjay Gupta are now lending their names and their support to a campaign that reflects this very same message of connection: Just Say Hello.

And although this article is not “new,” and in fact, was my very first post when I arrived at FIRST nearly eleven months ago, the message itself is as resounding today as the day it went from a life experience to a life-changing moment.

I hope when you open your tea packets this week, you think of my story below – or better yet – that you reach out to a friend, a neighbor, or even a stranger you have never met. I hope that you are inspired to share a cup of tea, a bit about FIRST, and your life with ichthyosis…

…or to simply say hello.

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Ode to Tea…

{April 1, 2001} I spotted the name in the daily soup of tweets…One Hundred Cups of Tea. Now, you can call it karma, a sign from the teapotuniverse, or whatever your word is for “knowingness”, but I knew in approximately 3.3 seconds – the time it took to read the first sentence of his mission (can having tea with a stranger change your life?) – with no plans of traveling to the UK, and with a rather bitter distaste for tea in general that I would be having tea with him someday.

That day was today.

I will admit I had a little bit of the pre-caffeine jitters. But I was definitely more excited than nervous. After all, this person was making the most inconvenient of gestures – after traveling the first 3,500 miles, he’d stop in route from one side of the world to the other, to meet some lady he’d exchanged a few pleasant emails with…for a cup of tea. I mean, really, who does that?

After struggling to decipher the new atm-ish parking meters peppering the streets of Philadelphia, it suddenly dawned on me – what if we don’t get along? As I opened the coffee shop door with a four-sugar lump in my throat, I was pinched by the thought of the worst case scenario: volcanic silence – that unstoppable eruption of nothing to say moments…particularly painful amongst strangers. Ugh. I hate when that happens.

There was a slight, early-twenty-something-rocker-type with his head buried in a laptop, sitting in the middle of a couch. He is young enough to be my son, I thought. That can’t be him. Maybe it’s the other guy, slightly balding, with the golf shirt and the Wall Street Journal under his arm. Nope. The young guy stood up. And as he moved in closer it was undeniably the friendly-faced tea sipper from the internet. “You must be Greg,” I said, hoping he didn’t deny his identity and run from this forty-(ahem) year old woman, saddling a cumbersome stack of bags and books. “Yes, hello, nice to meet you Mo.”

Phew. My worries were dissolved by the mere tone of his voice. How cheerful, I thought.

In fact, it took but five minutes to settle in, order our chai teas, and start chatting through the hours like two old bitties at basket bingo. Not only had I lost concern with a difference in age or a lack of conversation, but I quickly recognized we were more like-minded than I might have imagined.

He began by sharing an important moment. The moment, in fact. The one when he found himself walking around London, a place he’d move to with such high hopes of finding his life’s next phase – but instead only finding a growing frustration with the take-no-prisoner pace of the city. One day, while making his way through the fumes of impatience, he noticed something deafeningly odd. “I was looking down at the sidewalk instead of up at the beauty. I’d already forgotten about the castles. The history. Why I’d even come to London.” He stopped and thought, “I don’t want to live this way.”

But instead of running away to that next safe place; instead of continuing an outward search to recapture his optimism; his zest for adventure…Greg journeyed inward.

He wondered why he…and London…came to feel this way at all.

He wondered about the voices between our individual worlds – the ones that judge, that doubt, that keep us away from the conversation…the ones that make us strangers. “What if we look up, look at each other, actually have a conversation. Will it make any difference at all?”

Mostly, he wondered “Can a simple cup of tea with a stranger, change my life?”  Soon after his journey to have tea with 100 people, whom he had never met, began.

He spoke of the people he’s shared tea with thus far; the lone German woman he’d met on the bus; the older couple at the airport; the man outside the restaurant in the midst of a full-blown panic; the emails, the odd per-chance meetings; the occasional struggle to fill the awkward space of silence – the profound lessons he’d been learning from each and every encounter.

“I know now more than ever how important it is to have conversation. We’re pushing away from each other and we need to push back in the other direction, we need to really see each other again,“ he explained.

Soon the story of Greg was becoming very clear to me. This young Canadian man, a self-admitted non-social-butterfly, whom I’d never seen, nor heard of, who had taken a plane to New York, a bus to Philadelphia, slept in a hostel, and made his way through a strange city for a stranger…was the perfect person for me, or anyone, to meet for tea.  Because, as evidenced in his poetic one hundred cups journal, he is not only a delightful storyteller, but he is blessed with the gift of listening.

After three and half hours, it was time for us to part ways. I walked to my car, stuffed a soggy parking ticket in my purse and smiled as I realized something that I will carry with me for the rest of my days. Hmm. Just one cup of tea and we are no longer strangers.

I sat and jotted a few thoughts…

I think, some day, this young man’s life may be quite celebrated; at least for those who need him to be.

I think I will drink more tea.

I think I will one day write more of an ordinary Canadian who chose to have tea with 100 strangers — and in doing so, achieved the extraordinary.

I think someday, because of him, there will be a little less loneliness in the world.

I think there will be more empathy.

I hope so.

It’s such a beautiful dream…

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 Phantom Tea for Two


Living the life you are meant to live…

We are delighted to share a guest post from FIRST member, blogger, portrait photographer and author, Courtney Westlake.

 

Courtney, as many of you know, is the mother of four-year-old Connor, and two-year-old, Brenna Westlake, who is affected with Harlequin ichthyosis. Her blog, Blessed by Brenna, invites readers into the Westlake’s lives and home, taking them along on a weekly journey of medical challenges, extraordinary courage, and the most unexpected life lessons of all. Her posts are a unique blend of topics including personal insight, clinical explanations of ichthyosis, and heartwarming updates on Brenna’s amazing progress.  It is not only a cultural commentary on living with a rare genetic skin disorder but an authentic, inspirational and truly unforgettable journey of love, hope and family.  Her blog this week expresses a moment of  transformation and the deep realization of “accepting the life you were meant to live.” 

 

My survival mode and the loss of the life I had planned

by Courtney Westlake

We are now entering the third year of Brenna’s life, and it seems very surreal to me. Every memory of the years since she arrived are some of my most vivid but yet almost part of a blur too – a blur of emotions, adjustments and just trying to find my way. And relying heavily on God and others.

Even though I’ve been a huge fan of Crystal from Money Saving Mom for a long time, I think I was most looking forward to reading her newly released book because I could relate so much. When I first saw the title, Say Goodbye to Survival Mode, I knew I would be able to both relate to the book and take away so much from it.

Because I was in the trenches of survival mode for a long time. The kind of survival living where life continues around you at lightning speed, but all that you are focused on is whether your child will live. The first year of Brenna’s life, I often felt like I was being smothered. Smothered in grief, frustration, stress. I did my absolute best to focus on the positive.

Courtney Holding Brenna

I said no and stepped away from just about everything I had been involved with. I cut my photography studio work way, way back – after having just completed a beautiful renovation to my studio space the year before. I stepped away from volunteer roles with community organizations. I quit most of my freelance writing jobs.

And instead, I lived one day at a time that year, maybe one week at a time during the better times.

In 2012, there was a NICU stay, eye surgery, 4 additional hospitalizations, surgery for g-tube placement, and multiple skin infections. That was what consumed me that year, and I don’t remember much else. I was surviving, and that was the only option at the time.

I forced myself to get dressed in the morning, to try to find a schedule, to become educated on Brenna’s skin care, to continue to do activities and read with Connor as usual. I forced myself to concentrate on the good instead of the bad. Many times, I forced myself to smile.

(And I accepted help. Because I knew that I needed it. I relied so heavily on everyone in my life for help. Lots of help. We have had so much help I can’t even name it all. And I know without that help, I would likely still be in survival mode. And I just want to take this time to say thank you to all of you for all you did for us during that time. I remember every single act of kindness, every card, every message, every gift card and meal. And I still think about your incredible generosity and thoughtfulness all the time.)

And I would say with complete certainty that every morning I got dressed, every time I focused on what we could do instead of what we couldn’t do, every time I made myself smile instead of cry, it was worth it.cIMG_0145

Because eventually time wore on…and we began to adjust. To life with two children, to life caring for a rare disease. And I realized that I had the chance to take this opportunity to rise up from living in the day-to-day to living both in the present and for the future. I realized that even though you may not be living the life you had planned, that shouldn’t stop you from living the life you were meant to.

Don’t let the loss of the life you had planned stand in the way of the life you were meant to live.

I felt like I was no longer giving things up, like I did that first year, but instead that I was being pulled in new directions, better directions. And I could follow those new paths by choosing the best attitude every day, by choosing to life with intention, by goal-setting again, by using my time wisely.

And I felt like I was almost getting a chance to start over. I could pursue my “best things,” as Crystal calls them in her book – the things I was most passionate about and most set me toward my goals and most fulfilled me.

As Brenna’s health care became less stressful, I did sit down and evaluate exactly what was most important to me and what I wanted to be involved in and what I actually felt like I had time to pursue again. Over the last two years, I’ve stepped back into some of my former roles, and I’ve chosen new ones, like becoming involved in FIRST.

I also have done a lot of praying. I have tried to really open my heart and listen to where God seems to be telling me to invest my time and my energy. To where I should be using my gifts and talents. And how to best care for and provide for my family right now.

CourtneyWestlake-2036In the first year, this blog (referring to blessedbybrenna.com) was very concentrated on one thing, the thing that was the focus of our lives at the time – Brenna. I was even encouraged by a lot of people to share more about other things in our lives, including about myself, but I just couldn’t. There wasn’t much to write about, because my life seemed to revolve around Brenna’s health.

But, gratefully, even though Brenna’s health is obviously a top priority for our family, our lives are now becoming much fuller with other passions and priorities that we have. I am no longer simply surviving, but I am living with intention and purpose again…and much more so than before Brenna’s birth. Though certain times still call for survival mode, I now know how to rise up again from surviving to thriving so that I am not continuing to live in the day-to-day.

And because of this, my writing and my blog have also evolved. I am pursuing more of “my best” and, as you probably have noticed, I am writing more about those things as they all relate to motherhood and the kind of person that I am striving to be…things like my personal goals, freezer cooking (a growing passion of mine and something that saves my sanity!), the books that I’m reading, the books the kids and I are reading, my emotions and feelings as a mother, some of my various writing projects, and my family.

All of these things – not just Brenna alone – influence my life and my role as a mother and wife…and these things are part of the new world of beauty and appreciation for difference that I have discovered because of Brenna’s arrival into our family.
My survival mode was a dark time….a time with a lot of tears and stress and mustering up all the energy that I possibly could just to parent Connor and Brenna every day.

I am proud to say that I now feel like I am living with purpose and intention just about every day. There are many areas I need vast improvement in, and purposeful living is always an exercise in discipline – it is something I work at every day.

But I’ve found that once you get into the habit of smiling, of choosing to see the good over the bad, it comes more easily in all areas of life. And it greatly impacts all other areas of life.

My life today looks much differently than when I envisioned marriage, children and my career as I was growing up. My planned life was much, much different than my real life is. But today, I’m realizing that this is the life that God had planned for me. When I was clinging to the things I felt like I was having to give up, God was leading me toward a different path, a path where I would be able to use the gifts and talents he gave me in a different way, as part of his plan. In each new season, I am striving to open my heart to where I believe God wants me to be and to go.

Now that I have stopped mourning the loss of the life I had planned,

I am discovering every day that the life I am meant to live is so much better.

bookcoverCourtney has recently released her beautiful and inspirational book, That’s How You Know, available at www.blessedbybrenna.com.  Like a warm hug from a very best friend, its uplifting messages and soft illustrations offer hope and inspiration on every page.

 


Different is Beautiful.

It was truly amazing to see the response from our members and followers to the TinySuperheroes T-shirt promotion, created in honor of their one year anniversary, and also in honor of their very first cape recipient, FIRST member Brenna Westlake.

“In just five days 75 t-shirts have been ordered! In my mind, a total of 100 for the month was the original estimate,” said an excited Robyn Rosenberger, founder of TinySuperheroes. “Luckily the t-shirts are print-on-demand, so bring it on!”

If you are a fan of our Facebook page, you’ve already seen the uplifting phrase splashed across the front of the shirt, “Be Super in the Skin You’re In, Different is Beautiful.” It is as simple as it is powerful, and is striking the most resounding chord with our audience.

In fact, it seems this message has satisfied a craving; a desire for the opportunity to project one’s own voFB6ice, speak one’s mind, and be a part of something that is inspiring such a profound change in perception. It got us thinking how important it is for people to feel like they are not helpless; that they themselves possess the deepest potential for transformation.

And although it has only been a few days, we have already witnessed the transformation ourselves. As these individual voices of courage join forces, together, they are becoming as strong as the most powerful of choirs. Different is Beautiful.

Purchase t-shirt here:
TinySuperheroes


Carly Findlay, Big Ambitions, Strong Work Ethic…and a Loud Laugh!

Carly Findlay, a young Australian woman, affected by Erythroderma and Netherton syndrome, has endured the daily stares and insensitivity of strangers, for as along as she can remember. She has walked the unpaven path of rare disease and experienced a side of life that many people will never know –  and still yet, Carly greets each day with an open-armed optimism, and an enviable zest for life.

FIRST has been following Carly as she courageously and candidly shares her experiences, and her resonating words of wisdom. Her weekly blog takes us to the most unexpected places – switching the lights on and opening our eyes to not only a whole new side of the world, but a new side of life. Carly’s side of life: the bright side.

Today, we are delighted to have Carly Findlay share the secret of her optimism and her fool proof recipe for resilience:

I present with a red face, a sore body and scales that leave snowflakes on every surface – it’s ichthyosis – if you want to be really specific, it’s a diagnosis of erythroderma at birth and Netherton syndrome at age 10. I also present with a sunny disposition, a positive “this is just how it is” attitude, a zest for life, big ambitions and strong work ethic, and a loud laugh. I don’t so much notice the stares anymore – my friends and family do. I tell them “keep walking, don’t worry about the stares.”  And we do. The stares don’t stop me. I’m confident enough  to hold my head up high.

I get asked a lot about my level of positivity and resilience , despite my ichthyosis. Doctors, colleagues, other people with a wide range of disabilities, parents, audiences I write and speak for – they all ask. Some have told me they could not face the world if they were in my skin.

I think it comes down to being raised by very encouraging parents, and having a strong sense of self worth and acceptance of my ichthyosis. This is the life I’ve been given and I’m going to live it to the full. It’d be tiring to let the hard times get to me. I’d be lost without a full life. I believe happiness is a choice, and with happiness there’s hope. I’ve chosen to make the best of what may have been a difficult situation.

As a child, it was hard. I tell young people and parents of babies and young children with ichthyosis this. And then I tell them that it gets better.   I want to show people that life can be pretty good living with a visible difference.

I can have a big laugh at myself (and the funny situations when people ask me what happened to me). Living with ichthyosis is pretty funny. When I traveled to America, I had four members of the LAX bomb squad come to investigate my jar of prescribed paraffin because they thought it was a safety threat (despite a letter from my dermatologist and liaison with the airline prior to my trip). It was hard not to laugh!

I also have the following tips for staying positive, (as originally provided to FIRST member DeDe Fasciano and posted to her blog, http://ouryoungwarriorevan.blogspot.com):

- Try not to compare yourself with others (or parents, don’t compare your kids with other kids). Your progress is your own. You may look different but you’re perfectly you.

- Have a good relationship with your doctor. Hopefully you’ll be seeing a dermatologist. If you’re not, ask your general practitioner to refer you to one immediately. See them regularly. Listen to their advice, but also let them know you want a say in your treatment. You’ll know what feels best for you. As you grow up, you’ll get to know your skin pretty well.

- Try to stretch yourself as you mature. Get out there and have a go – play sports (though this is my least favorite thing!), join a group like cubs or girl guides, sing in a band. You’ll make heaps of friends and learn new skills. The best thing I did was get a part time job in a department store age 17. Working in a public role helped me become more confident, and it also forced me to answer questions about my skin in a calmer and more professional way. I made life long friends at this job. I wished I’d started working earlier.

- Find a support group. Your local hospital may run one. You may find one online. You need not even talk about your ichthyosis – you may want to just talk about your interests. Remember though, everyone’s experiences are different and what works for your friend in the support group may not work for you – check with your doctor before trying something new. And don’t let others’ issues with their illness bring you down. Surround yourself with positive people

[Carly Findlay lives in Australia. She is an award winning writer, documenting what it's like to live with ichthyosis and a visible difference. She sometimes speaks to a large audience, presents on community TV and does the odd radio show. She says the best part of having ichthyosis is that paraffin and constant skin renewal keeps her looking 23! Ichthyosis is better than any anti-ageing product.

Read Carly's blog at http://Carlyfindlay.blogspot.com]