As a mother of a son living with PNH for more than 2 years, I’ve learned how to be a strong advocate. I hope that by sharing my story, I can help others who may be struggling, just like I did when he was first diagnosed. It can be challenging to know what to do, what to say, and where to turn for information, but I’ve learned that my love and support as a mother, and my determination not to let PNH hold him back, are the greatest things I can do for him.

I asked about life expectancy, bloodwork, medications, and the impact of the disease on his body. I asked for resources and support services to help him adjust to life with PNH. You name it, I probably asked about it. We also worked closely with his case manager to get him the support he needed to address the physical and emotional impact PNH was having on his life. It was critical for me and my husband to play this role early on, while my son was still in and out of the hospital and coping with his diagnosis.

One thing I saw in my son was perseverance. He had it while navigating hospital visits, changing jobs, dealing with health insurance, and accepting his disease. His diagnosis was overwhelming for our entire family. However, by persevering together, leaning on each other for support, and knowing the process would take time, we made it through some of the most challenging times.

We never stopped believing we’d find the right doctor and the right plan to manage our son’s disease and all the challenges that come with it. We refused to accept the status quo or that our son would be prevented from exploring his dreams. We gained strength and resiliency along the way, which allowed us to better manage the curve balls PNH has thrown at us.

I know the journey as a caregiver is not easy, but it’s necessary. Always remember you are not alone, and by helping your PNH loved one in big and small ways, you are being the best advocate for them.