Grieving a tremendous loss for our Harlequin ichthyosis community

I never imagined I’d be writing this. I was shocked when I received this news, and my heart is heavy as I share it.

Our beautiful friend Stephanie Turner passed away unexpectedly on Friday.

Stephanie was the second oldest person in the United States living with the same condition as Brenna, Harlequin ichthyosis, and she made history when she became the first woman with H.I. to give birth… first to her son Willie, then a second time to her daughter Olivia.

Stephanie was a champion for the ichthyosis community, displaying a tenacity and positive attitude that was exemplary, along with the brightest smile you can imagine. Her faith was strong, and she was always quick to offer praise and express trust in God for His plan and purpose for her life. Her death is a tremendous loss for our little community, but especially for her husband Curt and two children, who are only toddlers.

cIMG_9640

In 2013, we got the opportunity to spend time with Stephanie and her family in person. When we got to meet Stephanie, her husband Curt and her mom Donna – and sweet baby Willie! – it was like getting a hope-filled view into Brenna’s future. Stephanie was happily married, independent and exuded a purposeful contentment with her life.

We spent a whole afternoon there, talking about everything from skincare questions to hunting to raising kids, while grubbing happily on pizzas.

cIMG_9634

Over the years, Stephanie generously shared on this blog about how she and her husband met and her experience with Willie’s pregnancy, and then when Olivia was born a year-and-a-half later, she wrote again about becoming a mom to two and what that was like for her skin care routine taking care of two babies.

She never complained about how difficult it was, although I’m sure it must have been very overwhelming at times, but her heart was always so full of love for her beautiful family. She told her story often for other blogs and news outlets, educating about physical differences and ichthyosis.

I’ve often shared in speeches I give to churches and moms groups about Stephanie becoming the first woman with Brenna’s condition to have a baby, and it’s often difficult for me to get through that significant detail without choking up a bit.

cIMG_9642

Though it’s hard to accept that Brenna won’t get the chance to get to know Stephanie as she grows up, I know she will still have a role model in all that Stephanie did, emboldening her and empowering her to live a life taking risks, offering big love and praising God along the way.

For all of the annoyances and distractions of social media, the one real goodness is the way it converges strangers’ lives, bonds us when we cannot be together in real time. It creates a community of loved ones across the country, across the oceans. And our ichthyosis community is reeling from this loss of one of our beloved members.

Grief is thick, heavy. Though I have only embraced her in my arms once, Stephanie’s death is weighing on my heart – not only for her devastating absence in her family’s lives but also because it is a stark reminder of the fragility of this severe condition and of life in general.
Stephanie Turner family

Stephanie was extremely giving of her time, knowledge and experience as she reached out to families all over the world to offer advice and answer questions about living with and caring for children with Harlequin ichthyosis. As her family struggles to raise money for her funeral services, it is my hope that this online community may prayerfully consider giving to help her family during this time. You can contribute to her family’s GoFundMe account here.

We thank you, Stephanie, for all you gave to our family over the last five years…much-needed advice, strength, friendship, and especially hope. Though we know you are drenched in the love of Jesus in his Father’s Kingdom now, you will be tremendously missed here on earth.

Ups and Downs with Brenna’s Health

Last Monday, Brenna was diagnosed with a skin infection – her first since last summer – and started on an antibiotic.

But on Wednesday, she awoke from her nap with a fever, and again woke up after going to bed for the night with a fever. Both came down with ibuprofen, but the trend repeated on Thursday too. I thought it was strange that she wasn’t waking up in the morning with a fever though. On Friday, another fever – and we realized that all fevers were starting within a couple of hours of getting her antibiotic dose. And of course with fevers came fatigue, not eating or drinking well, and sore skin.

Our doctor gave us the OK to stop the antibiotic on Saturday morning, much to our relief… until Saturday afternoon when we noticed the whites of Brenna’s eyes were yellowed. On advice of our pediatrician, we headed to the ER, anxiously dreading being admitted to the hospital.

To our relief, they discharged us after examination and consultation with several doctors, with instructions to keep a close eye on her but fairly certain that the adverse reaction to the medicine was also causing this jaundice.

The rest of the weekend didn’t offer much improvement though. Finally, Sunday night, Brenna began to gain some appetite again – thanks to her favorite Casey’s pizza 🙂

Yesterday morning, Brenna had lab work done that showed elevated levels in some different areas of her body (bilirubin and liver), so yesterday late afternoon, she went back for more lab work to try to narrow down why.

Today will hopefully offer more answers – and hopefully more improvement too.

You know you’ve seen entirely too many doctors when sticker collection in your bag looks like this…

We are relieved that Brenna’s skin is appearing typical and comfortable for her at this point as we continue to treat it topically. But she is tired, and her fluid and food consumption is definitely decreased. Now we just need to figure out what’s going on inside and how to fix that too…

Subscribe to my email list to download a list of my favorite children’s books about differences and disabilities.

Follow me:  Facebook | Pinterest | Twitter | Instagram