Anderson and Alicia on Feeding Tube Awareness Week
Breastmilk and formula. Baby led weaning. Picky toddlers. Parents are often overwhelmed by the decisions and challenges that feeding our children bring. But what about those that face additional medical challenges?
We’re currently in the middle of the 7th annual Feeding Tube Awareness Week (February 6-10, 2017).
There are more than 300 conditions that can require a child to use tube feeding; some will encounter it briefly, while others will maintain tubes through adulthood. Unless you’ve known someone who relies on tube feeding, you likely know very little about it. But we’ve got the team to change all that!
Meet Alicia and Anderson. I first met Alicia when she was helping our boys tube feed as preemies in the neonatal intensive care unit (NNICU) of The Moncton Hospital. At the time, she was pregnant with the cutie you’re about to meet, Anderson.
Anderson was diagnosed with Rubinstein Taybi Syndrome (RTS) at two days old. RTS is rare genetic disorder that occurs in roughly one in 125,000 births. Anderson’s disease comes with many implications, one being challenges with feeding, which is the focus of this video.
I’m constantly inspired by Alicia, who shares her family’s journey openly so that others can learn. She’s honest, she’s funny, and she’s a kick ass nurse!
My request to you all reading this today; if there’s a parent who makes you appreciate life just a little more, who pushes you to try a little harder just by sharing themselves – tell them today. Oh, and share Anderson’s story or a similar tubie tale to spread a little kindness and understanding for Feeding Tube Awareness Week.
I’m so glad Anderson is doing so good! He looks wonderful! You had actully done some care of my DS daughter when she was in Neo natal and also we had met Anderson at some of the immunization appts. I’ve wondered how he was doing! He looks so happy ?
GReat video Alicia, Anderson is such a cutie! THis would certainly put anyone’s mind at ease about feeding tubes if they or their child had to use one. THanks for being so open and willing to share your story.