When you learn your child has a rare disease diagnosis, it’s world-shattering. Throughout our journey with Alagille syndrome (ALGS) over the last 5 years, I’ve learned that it’s critical to find a healthy and strong support system.
At first, it was hard to process the news. Of course, with a new diagnosis, everyone you encounter is supportive. People send text messages, offer help, reach out to see how you are, and even offer to send meals.
As life continues, people go on with their lives while it seems your life stands still in this nightmare that’s become your new normal. The text messages and offers for support are less frequent and it’s easy to feel alone and like you’re being swallowed whole. Even those who remain in contact and try to remain supportive of you don’t fully understand your journey unless they’ve been in your shoes. If they haven’t been in a very similar situation, they can try to be supportive but they won’t fully be able to grasp the emotions you experience.
At first, I found solace in the ALGS Facebook group. I tried to look for any and all connections I could. Finally, I found a mom who just got the ALGS diagnosis. She seemed a lot like me and this was her only son, like me, and his involvement of his ALGS was very similar to my son as well.
We started to chat, and we hit it off. We talked often and regularly checked in with each other. We would let each other know how regular clinic visits went and even how the sleepless nights were going. She was a wonderful sounding board and it felt amazing to have someone to compare lab results with and walk hand in hand with down this road. Over the years, our sons took different paths so we don’t chat as often, but she was my first friend in this community.
A few years into my journey with ALGS, a coworker told me she knew of an acquaintance that just had a daughter with liver concerns. They thought one of the possible diagnoses was ALGS and she wanted to put us in touch. I was so happy that during this unknown time for her I could be a sounding board. She was free to ask me all questions she had, and I was happy to answer. The thing that was so great about this newfound friendship was that she lived only lived 20 minutes away.
Read more about the diagnosis of ALGS
We used the same hospital and team of doctors. Over time, we have become great friends and I am so thankful every day for her friendship. We have created a special bond. We text daily and we both are there to support each other. When we are anxious, get test results, or just need to vent we are there for each other. It is so wonderful to have someone who fully understands my life. Not only regarding being a parent of a kid with medical concerns but a parent to a kid with ALGS.
Now I understand how much I craved a support person who understood what I was going through I try to be that person for other people. I try to reach out to people who seem to have very similar situations on the ALGS Facebook page to let them know I’m happy to chat and share my experiences.
Most recently, my husband hired a new employee who is going through her own struggle. Her newborn son has his own rare disease that centers around serious heart conditions. One day, I asked her how she was doing, and I could tell by the look on her face that she was stressed out. I invited her to brunch so that we could spend some time together and I could allow her to talk about her situation. Even though we are dealing with two different rare diseases, I felt good connecting with her on a mom-to-mom level and understanding her feeling. Even though I might not fully understand her son’s diagnosis, I understand how it feels to go through a diagnosis of a rare disease and try to find your footing.
I am happy I was able to be there and support her just like I have had a few special people do for me. It makes the world of difference in helping you move along through life when you feel the walls are caving in and you are so alone.