International Rare Disease Day: The Story of Little Harley

My daughter is Harley Corbeil, she is 5 years old. She was born with Smith Magenis that comes with a lot of complications. She has a narrow aorta and very tiny vessels that are not growing with her body. So her brain is not getting the right amount of oxygen and blood at all times which caused her to have 3 strokes so far which left her completely dependent on others for everything and non verbal.  She is a very rare case and the doctor’s are doing their very best to help stabilize her condition for no further strokes.

Harley is a people person, she loves interacting with others through music, dance and play. She adores when her brothers play around her and they make her laugh so much. She has been through so much and yet she is always smiling.

Having a child like Harley is very demanding  especially with 2 other kids, and can be sad at times.  She is dependent for everything , eating by gavage, bathing, interacting and even changing positions. She has a lot of doctors appointments, surgerys and medication to take 3 times a day. But seeing her smile through all of it and hearing her laugh really helps give the motivation to keep going everyday. And working to get her stronger everyday.

We have been frequenting Le Phare for about a year now and i have to say at first i had my reservations about leaving my 5 year old non verbal daughter somewhere we didn’t know with people we and specifically she didn’t know. But after visiting one time for 24 hours. WOW! did it impress me, and it was hard at first to let bring her and leave her. But what a difference Le Phare makes for us and especially for her. Everytime i pick her up she has big smiles and looks so fresh and vibrant. I can tell they really stimulate her and we are all very grateful!

These respite times allow us to catch our breath, think of other things and live as normal as we can for that time knowing she is being taken care of very well and most importantly giving our 2 boys the attention they need and deserve.

She is special and unique and she is our little peanut! 💜

-Vanessa, Harley’s mom, 5 years old.