April 23, 2017
By Nowshin Tabassum
Categories: Satellite Races
Posted on by Elke Phillips
It’s two weeks until the Providence Half Marathon. I’m so excited to be participating as a member of the Running for Rare team. I’ve definitely been procrastinating on this blogpost but only because I’ve never blogged before and am not really sure what to write about. So, I thought I would talk about the reason why I’ve joined Running for Rare – my daughter, Lena. My sweet girl is 21 months old. She is headstrong, smart, funny, adventurous, loving, feisty…AMAZING. There are so many adjectives to describe this precious gift in our lives. She has beautiful blue eyes and sandy blonde hair that is now so long it is always in her eyes, but she refuses to let me do anything with it to keep it from annoying her. Headstrong for sure! Her smile can light up a room! She absolutely adores her daddy and big brother! I know she loves our kitties, too, but with her love of dogs, she may wish they were dogs instead. ???? She is happiest outside and prefers to snack versus eat meals. Favorite snacks include bananas, pretzels, carrots, pickles, waffles, and applesauce.
I wonder sometimes what her favorite foods would be if she could eat anything and everything. Maybe at this age her likes and dislikes wouldn’t be so different even if she did not have Phenylketonuria (PKU). We won’t ever know, but at least we know how to keep her healthy. I am so grateful for this every single day. Grateful for the dedication, research, and hard work that has been put into learning more about PKU; grateful for the creation of the newborn screening test, for the low protein diet, for PKU formula, for delicious low protein recipes, for our clinic, for this community. Because of all of this, Lena is flourishing!
This community is so amazing in its support for one another. It is awful to get that call from the pediatrician’s office telling you your newborn may have a rare disorder – PKU, who has ever heard of that; no one I know, for sure – and in those first moments, hours, days, waiting for the confirmation, Google is most definitely not your friend. But once you come out of the fog a bit and reach out to others, you feel welcome and realize you are not alone in this. You learn to take it day by day, step by step.
Step by step. Just like running. There is no true comparison between running and living with a rare disorder. Lena’s journey with PKU is lifelong and more difficult than any race I will ever run, but I do hope that the small steps we take to raise awareness and funds through initiatives like Running for Rare will help bring answers, treatments, support, research, etc. to the unknown rare disorders because at least we know what PKU is and how to manage it. No one should have to go without diagnosis or a plan for treatment.
NORD’s motto says it best – Alone we are rare. Together we are strong.