24 Jan Nikki Patrick
When my fourth child was born, a beautiful little girl named Felicity, I thought our family was complete. I had 4 beautiful children, a loving husband, and a happy successful life. I soon realized there was something amiss. My fairytale turned into every parent’s worst nightmare.
Immediately after birth, I noticed differences with Felicity. She breathed very hard and fast. She didn’t grow like my other children. She didn’t easily nurse. She had excess skin hanging all over her limbs and neck. I was told many things; reflux, a cold, allergies. In my gut, I knew this was bigger.
I was right. The last 21 months have taken us on an odyssey to find a diagnosis. Prior to this, I had no idea that modern medicine sometimes has people that are not able to be diagnosed. The idea was bewildering to me. Our journey took us to many notable and well-respected institutions, all giving us the same answer; “we simply don’t know.” Finally, a geneticist urged us to apply for the Undiagnosed Diseases Network.
I began the process hopeful but realistic. I was not even sure Felicity would be accepted. When she was, I was so happy, but also reserved. I knew this was our last shot at an answer and a chance to save my daughter. We were scheduled to attend in November 2020. In October 2020 Felicity’s condition deteriorated to the point of choosing to take her home on hospice. She died in my arms in December 2020.
Bewildered, I reached out to our nurse coordinator at the UDN who assured me that the search for a diagnosis does not end with her death. The UDN is still committed to finding a reason why my sweet and beautiful 21-month-old girl died. They are invested in our family and helping to give us some bit of peace. Not knowing why your child died is torture. The UDN gives me hope that one day, we will know what took her from us. It also gives me hope that once identified, it will provide valuable information for my children as they grow and start their own families.
The service and work provided by the UDN is invaluable. There are thousands of people who are desperately searching for an answer for their life-altering, and in some cases, life-ending diseases. For our family, the UDN represents hope. Hope for a diagnosis for my daughter. Hope for the prevention of this happening within our family again. Hope for a bit of peace.
My heart is devastated by the loss of my sweet Felicity, but I choose hope. The UDN represents hope for so many for whom there is no other path. I am grateful for their continued interest and commitment to our daughter and our family as a whole.