Love-Winters Family Blog

Welcome to our family blog. We've been experiencing complicated changes in our lives, and we hope this helps keep our friends and family informed.

You can contact me at "patrick [at] lovewinters.net" if you're a parent of an affected child and want any help, support, or information. I've also put together a Anti JAK Guide with everything I know as of May 2019 about the research and logistics of the experimental treatment that my daughter is benefiting from.


16 Posts

Happy Birthday, Aurelia

November 13, 2019

We're excitedly celebrating Aurelia's second birthday today, and we trust that the years to come will be kinder than what has passed. We…

Our Wild Ride

October 2, 2019

I'm feeling like it's time for me to slow down and write fewer posts. I'll admit that I had hoped for more improvement this year and that…

Summertime

August 23, 2019

I recently returned from a three week, self-imposed exile in South Florida. With Lennox starting elementary school next week, we wanted him…

Peace

July 23, 2019

We're finally achieving a peace that has been hard won. The past month has brought more of the same kind of waves that have made this year…

Auri's First Milestone

June 19, 2019

The 15th of June marked four months of Aurelia's treatment with Baricitinib. When her treatment started, we were given the expectation that…

Slow and Steady, Auri. Onward, Max!

May 22, 2019

Slow and Steady, Auri Slowing Down Heading in to Mother's Day, I think Natalie and I had been feeling a little defeated. For whatever reason…

For A Wonderful mother

May 12, 2019

Our lives flipped upside down, but I'm grateful to have such a strong partner. She's become a veritable super mom, carrying my daughter and…

Lennox's Birthday and Some Videos of Auri's Movement and Play

April 28, 2019

A Roller Coaster Ending With Improved Lab Tests It's been a stressful few weeks. On my birthday, April 9th, Auri had some disappointing lab…

A Week in the Life

April 5, 2019

With this update, I'd like to give everyone a sense of our weekly experience. We have a lot of regular appointments with doctors and…

Anxiety

March 24, 2019

In my past and with mixed success, I've fought my tendency to withdraw. A good friend once described me as "insular," and, admittedly, I'm…

A Trip to Philadelphia to Gather More Information

March 9, 2019

Auri, Natalie, and I traveled to Philadelphia this week to consult with Dr. Vanderver at the Children's Hospital of Philadelphia (CHOP). She…

Celebrating Progress

March 1, 2019

I've been cautious and hesitant to openly acknowledge how well things are going because of how fearful I've been ("hope is the luxury of…

With Auri and Hope, Into the Unknown

February 23, 2019

Having started Auri's drug therapy, we're inching into the unknown, still carrying the fear that has caused us indescribable grief. However…

Tomorrow Begins Auri's Fight

February 14, 2019

Until now we've struggled to identify and understand Auri's disease, search for hope, and advocate for early intervention. The drug therapy…

Aicardi-Goutières Syndrome

January 27, 2019

On Thursday, we were told that genetic testing has identified a mutation in a copy of Auri's IFIH1/MAD5 gene known to cause…

Auri's Suspected Disease

January 12, 2019

At this point I think everyone has heard the term "leukodystrophy," and I thought it might be good for Natalie and I (and you) to hear where…