DAILY LIVING & MOBILITY

Aria Beth’s journey with Pierre Robin syndrome

Rare Disease & Syndrome

Aria Beth

What is Pierre Robin Syndrome?

This is our beautiful daughter Aria Beth who was born with a very rare syndrome called Pierre Robin Syndrome. Only 50 babies are born each year in the UK with this syndrome. This is where a babies chin is underdeveloped meaning it's recessed which causes the tongue to fall to the back of the throat obstructing the airway causing breathing problems. Also another part of PRS is a cleft palate.

Our Journey with Pierre Robin syndrome

My sassy little madam took no messing and decided to pull her ventilator out at 2 days old, was tube free by 7 months old and overcome cleft repair at 10 months old. Aria has had breathing tubes and feeding tubes in the first year of her life but has smashed through all these hurdles like our little warrior princess. She has learnt how to breathe by herself, take milk from a bottle and overcome everything thrown her way.

keeping our chins up with Pierre Robin syndrome

I will forever tell my daughter she is 1 in a million and as us PRS parents say always keep your chin up. Pierre robin syndrome babas are extraordinary and they fight every hurdle that is put there way. They truly are 1 in a million. This syndrome needs so much more awareness and I will forever share Arias story with the aim to help other parents who are just starting there journey. 

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