If you follow this blog, you’re already aware that I have been traveling to London with my husband who is being worked up to donate a kidney to my son who was born with Prune Belly Syndrome and Chronic Kidney Disease.
Today is World Rare Disease Day, and so I find there is no better day for me to share this heartfelt story.
Over months and years sharing our story, I have been contacting by several parents of Prune Belly Babies whom I have had the pleasure to connect with, share concerns, mourn the angels taken too soon and offer well wishes to our little warriors.
To my knowledge, there are no other Prune Belly babies in Malta and our only means of communicating with other families is through social media. So, you can imagine my elation when one parent I have been in touch with contacted me to let me know that she would be in London with her adorable 3 year old son Emmett and her husband, and if there was a slim chance we might be in London at the same time.
Unlike our previous trips, our last visit to London was a short stay, jam-packed with appointments for both Henry and R. Needless to say, we were exhausted physically and mentally by the end of each day, but we were going to do everything to meet up with Emmett and his parents.
There we were with these two boys, one from Malta and one from Washington DC, meeting in London. Both R and I were so relieved to talk about things only other Prune Belly parents would understand. And when we all asked what was in the fish we ordered for the boys lunch, we chuckled at how comforting it was to know exactly why we were asking.
The boys were instant friends! They spent lunch time proudly showing each other their bellies, hugging each other, and rough playing just like other little boys as if they had been friends forever. As for us parents, we weren’t hugging and wrestling or showing bellies, but being able to talk about similar concerns was a comfort I had not yet felt with any other parents.
It warmed my heart more than I can explain.
Here’s hoping we’ll stay in touch and that the Henry and sweet Emmett might meet again one day.