Friday, February 26, 2010

Hope in Your Jeans?

Rather make that Genes. Well, actually, both!

I'm talking about The Global Genes Project World Rare Disease Day on Feb. 28. From their website, "Imagine lawyers in courtrooms, business executives in boardrooms, state legislators and others from all walks of life wearing jeans the week before or Friday before World Rare Disease Day – all to show their support for those affected by rare disease worldwide."

My first real introduction to rare diseases was in the early 1990s through Hannah's Prayer Ministries where I met many amazing families, some struggling to grow their families yet facing infertility due to the rare conditions faced by the husband or wife, others crushed under the grief that comes to parents whose children are diagnosed with rare, life-threatening (often "incompatible with life") diseases. At that point the only resource I knew to share with families were National Organization for Rare Disorders (NORD) and NATHHAN National Challenged Homeschoolers Associated Network.

Little did I know then how personally Rare Diseases would eventually touch our home. When our daughter was two we endured many stressful and frightening months as she was being evaluated for a specific form of dwarfism with many accompanying complications (something that's never fully been "ruled out" but because her growth has improved dramatically, investigation was eventually put on hold unless/until we have additional reason for concern). Then five months ago we learned of my XMRV diagnosis, a retrovirus that may turn out to be very wide-spread but currently has only been diagnosed in a few hundred cases because the testing is so new. I've lived with it for at least 19 years, possibly much longer, but doctors are just beginning to learn anything about my condition and still have no idea how to manage my care.

If you have a illness that "no one has heard of" it used to be that you might go your whole lifetime without ever connecting with someone else who knew your struggles personally. Now the internet makes it possible to find so much information (sometimes "too much" information!) and support communities abound. In honor of World Rare Disease Day, I want to point to the personal websites of a couple of families I regularly pray for, even as I'm inspired by their perseverance under trying times:

Heather (you might know her as "Especially Heather") is an amazing woman who has gone through more than seems fair for any one lifetime, yet her smile continues to shine for Jesus. Her story includes brain cancer and the removal of a tumor "the size of a nine iron" in 2007. But it's her daughter Emma's story that I want to point out today. This little girl was written off by the medical community before she was ever born but proved them all wrong with a lusty cry upon birth in 2001. She had a heart/lung transplant at just 5 months of age, has both Complex 1 and Complex 3 Mitochondrial Myopathy, is autistic, and is now waiting for a second heart transplant due to Transplant Related Coronary Artery Disease. As of this week, Emma was back in ICU running a fever of unknown origin and could use our prayers!

While we have yet to meet in person, though I've talked with their mother by phone and facebook and know their cousin well, Addi and Cassi Hemple are a couple of local girls who I've mentioned in the past. Living here in Reno, these 5-year-old twins who suffer from Niemann Pick Type C disease (childhood Alzheimer's) hold an especially tender spot in my heart.

I'm running out of time and energy to post other stories right now, but I couldn't close this short list of stories without mentioning the wonderful folks at the Whittemore Peterson Institute who are working nearly around the clock to find answers about XMRV for those like me who have already been identified and the potentially thousands or even tens of thousands (thus no longer making it "rare"!) more who are waiting for answers! Won't you please join me in wearing your jeans to show your hope in finding answers in genes???

What does wearing jeans stand for?

In the United States, a disease is considered rare if it affects fewer than 200,000 Americans. According to statistics from the National Institute of Health (NIH), there are thought to be nearly 7,000 life-threatening and heavily debilitating conditions affecting nearly 30 million Americans (1 in 10 people or 10% of the population). Despite the infrequency of each rare disease, the total number of rare disease patients in the United States is equivalent to the total populations of New York and New Jersey combined.

In the European Union's 27 member states, it is estimated that rare disease patients make up between 6% and 8% of the total EU population, or between 27 and 36 million people. This is equivalent to the total combined populations of the Netherlands, Belgium and Luxembourg.

Beyond the US and EU, few reliable rare disease statistics exist for other countries. Some alarming statistics that are currently available include:

* More than half of the 30 million patients in the United States affected with rare disease are children
* Approximately 15 million Americans have rare diseases for which there still is no approved treatments and no research in progress
* Approximately 80% of rare diseases are attributed to genetic defects, many which are untreatable and life-threatening
* In the 25 years since the Orphan Drug Act of 1983 was signed into federal law, the FDA has only approved approximately 350 treatments for all rare diseases combined

Are you or someone you love impacted by rare disease? I would be honored to pray for you if you would please share your story in the comments section here. I'm always thrilled to find new links to personal stories and support sites/organizations as well, so please tell me about the resources that have most helped you!

Monday, February 22, 2010

One Thing

Do you have "one thing" in your life you wish you could fix, change, replace, rewrite? Maybe it's a relationship, a loss, an unmet goal or expectation, a significant disappointment, a soul-deep struggle. While we probably all have many things we wish we could see unfold differently, what's that one especially sore "thorn" that follows you into every day of this life's season?

This morning I read a really fun and light, yet amazingly thought provoking devotional, based on that silly old song, "There's a Hole in My Bucket". It made me think a lot about the ways I try to fix that "one thing" that seems off in my life, how I try to fill "holes" and broken places rather than resting fully in God through them. I would love to share both the original devotional along with the thoughts it spurred for me, over on my InfertilityMom blog. Please join me at

Friday, February 12, 2010

Thin Places

Mary DeMuth recently sent me a copy of her new book, Thin Places. I knew it was a memoir, but beyond that really had no idea what to expect. So far I've only been able to steal away enough moments to read the introduction and already I'm enthralled. Mary describes thin places as "those times where the division between this world and the eternal fades; snatches of holy ground, tucked into the corners of our world, where we might just catch a glimpse of eternity." Check back here in the coming weeks (or maybe months - I'm a very slow reader) as I'm sure I'll have more to share about the book later.

In the meantime, I received an interesting invitation this week, asking me to share with you my own "thin place" story, a time when God burst through my life to remind me of His presence or reassure me of His reality. The story was to be exactly 259 words long. If you know my writing, you probably know that limited word counts are the hardest writing challenges for me!

Why such a specific word count? This is the retail price of a new Kindle, the contest prize for the winning essay submitted. Please join me for your chance to win a Kindle by sharing your thin place story too! (Head on over to for details.)

This story describing my journey in the spring/summer of 1994, started out at over 500 words. Even then I felt like I was leaving out important details, but I finally got it down to the exact 259. So here we go...

“I should drive across the median. I've failed at everything. They would be better off without me.” These mocking thoughts no longer frightened me.

My health failed first. I dropped out of school. Our business tottered on the bring of bankruptcy. Yet none of these were my greatest disappointment.

Two years of yearning for the fulfillment of dreams I had carried since my earliest memories left me disillusioned. “Lord, we are serving you in every way we know how. Don't you promise the desires of our hearts?”

I flung my Bible across the room. Remorseful, I ran to find it open to 1 Samuel.

“Not funny, Lord!” I hated Hannah's story. How could He put her through years of waiting, only to bless her with a child, then take back the thing she most longed for?

I sat down to read it again, to prove to God how cruel He was. What, God never demanded Samuel of Hannah? She gave him of her own free will?

Heaven broke through the hardness of my heart, not with an audible voice, yet with words that rang loud and true, “My child, you cannot treat me according to the gifts I choose to give or withhold. I AM worthy!”

I offered works in hopes of blessing. He wanted praise for the sake of love.

We lost our business. I never earned my degree. It was five more years before we held a living miracle in our arms. But I never fantasized about driving my car into another again.

Tuesday, February 9, 2010

Extravagant Love

Holidays such as Valentine's always make me reflective. For those of us in beautiful, happy, healthy relationships, we can celebrate the glowing joy of love on special day like this, but really I don't think we even need a date on the calendar because we are striving to live out our love on a daily basis. Even in stable, loving marriages, love can be painful at times, a continual stretching, growing and relearning. Rick and I will celebrate 17 1/2 years of marriage on Feb. 15 and each year has taught us new things about love, perhaps the last couple of years more than any before, learning to creatively express our love in new ways, within the ever-shrinking confines of health limitations.

For my friends who are in painful relationships, or grieving lost love, or simply waiting for love that God hasn't brought into your lives yet, I think this day must feel much like Mother's Day feels for an infertile woman or mother who has suffered the death of her child. If this is where you find yourself today, please know you are in my prayers!

May I encourage you to visit Mary Singer Wick at Extravagant Life for encouragement? Mary was kind enough to send me a copy of her book My Heart's Desire: A Journey Toward Finding Extravagant Love for review last year (Sadly, I'm 2-3 years behind on reviewing some of the books that have been so generously shared with me!) and her story of finding heartbreak everywhere she looked for love, to eventually find true love in Christ alone (then only after that, to be blessed with a loving, faithful husband as well) was compelling. In fact, I had my copy into the mail for a hurting friend within 24 hours of finishing my reading, it was such a powerful story that I just couldn't delay passing along the messages of hope and healing found within the pages. If you have been hurt by broken relationships, I know My Heart's Desire will be a blessing to you!

Over at InnerBeautyGirlz I'm sharing about "love" and what our Father's Love for us cost Him. Please join me!