Staying Positive & Never Giving Up Hope

How do you keep your hope?

One day when we were in the midst of a long hospital stay and I was at one of my lowest points, I went outside for a walk to clear my head while my daughter was sleeping. On my way back, it started to rain and I was caught outside without an umbrella. I ran back to the hospital and as I approached the entrance a new sign hanging in the windows caught my eye. It read, “When it rains, look for the rainbow.”

In that minute I realized, that’s what me and my kiddo have always done along the way. Through the storms, we always looked for what would be on the other side of it. We’ve been dealing with a disease most doctors have never heard of for years. It’s complicated, it gets progressively worse over time, and it’s hard to watch. But not one case is the same as another, and we’ve learned to focus on the positives in life because it really could be worse. We’ve learned to appreciate the small victories, to celebrate our milestones, and to always keep searching for the rainbow.

How have you supported others affected by your daughter’s disease?

A few years after my daughter’s diagnosis, we started getting involved with nonprofit associations benefiting cystinosis research. After connecting with other families and attending and supporting other fundraisers all over the country for a few years, we started our own Mulligans Fore Morgan charity golf outing in 2015, and have raised and donated over $120,000 for research.

After my daughter’s kidney transplant in 2020, her nephrologist asked her to mentor another teenage girl who was preparing for her first kidney transplant. My daughter, after struggling for so many years, was finally living her best life and was able to give back by connecting with someone else in need. We’ve celebrated their “tranplantanniversaries” together ever since, and they’ve become the best of friends. Despite different diseases affecting their bodies, they share so many similarities that they can lean on one another for support, and have a friend for life that understands the challenges one another faces.

There is something to be said about strength in numbers and connecting with others on a human level. When facing medical issues, it’s something you crave, something you need, and I encourage others to be open to making themselves vulnerable and connecting with others who may be going through something similar. My family has deep connections with folks that were once strangers from all over the country just because we were willing to share our story, be a part of something bigger. and network within our small but mighty community.

How important is it to connect with others when you’re being affected by health issues, whether a family member’s or your own?

For many years it was hard for me to even talk about my daughter’s disease without crying. As she got older, it was more evident that something was different about her after sharing pictures of her and her younger sister with my colleagues, clients, and coworkers. As her disease progressed, we had to start planning for future surgeries and balance multiple specialists and appointments and her story became a part of my story. I’ve worked for many companies that have supported the foundations we were supporting, and some have even helped raise money or have donated to our cause.

Along the way, I started speaking publicly about our journey and publishing updates in articles to show the impact of our fundraising efforts. I’ve cried on stage in front of hundreds of people, sharing my personal story with all the raw emotion involved. I’ve gotten standing ovations and have brought audiences to their knees. And I wanted to throw up before I went on stage every time, but coming out of each speech I’ve been able to connect with so many people, empathize with their stories, inspire them to make a difference, or just offered my listening ear or shoulder to cry on. By making myself vulnerable and truly opening up and sharing our story, I know I’ve helped so many people. I hear it from them firsthand, and it’s super rewarding.