Let me introduce myself...


I thought I should introduce myself. 

 My name is Alii, and I have a little girl called Penelope (she's the cutest). I am 30 years old, I have a tracheostomy (the little silver thing in my neck that helps me breathe) due to having a condition called Pierre Robin Syndrome. Throughout my life, I have had many different medical complications, 66 operations and a few near death experiences. 
I thought creating a blog would be a good way, to share my experiences and also understand myself a lot more... 


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Comments

  1. UnknownSeptember 17, 2019 at 1:11 PM

    Amazing. Well done and so proud of you. You are so brave for doing this, but also very inspiring too.

    ReplyDelete
  2. LesleySeptember 26, 2019 at 12:12 PM

    Looking forward to reading more, please tag me

    ReplyDelete
  3. LesleyFebruary 16, 2020 at 7:58 AM

    Alii, I first met you when Sharon and I interviewed you at Computer 2000. I was struck by your strength and ambition and caring nature. You just got on with life without feeling sorry for yourself, even when you weren't well and were always kind and thoughtful to others. Your desire to work with children showed your compassion. The words your family have written are very touching and show what a loving environment you had and how it moulded you xx

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The Beginning..

I’m going to start right at the beginning...  My Mum (Jules) and Dad (Barry) had 3 healthy boys, Phillip, Adam and Neil. My mum really wanted a little girl, so they tried lots of different ‘old wives tales’ to try and have a baby girl.  In July 1990, my mum found out she was pregnant with me. Due to being a pickle in the womb, they were never really able to tell my sex, or see any abnormalities.  On April 29th 1991, I was born. My mum had a very difficult birth with me, as I came out bum first with my legs up to my head and my arms wrapped around them, medically known as posterior flexed breech position. I had slight difficulties breathing when I was first born, but the main thing that was noticed is that my lower jaw was set back quite far. This was when I was diagnosed with Pierre Robin Syndrome. (You can find out more about this in another post). As my lower jaw did not form properly, my upper airway was unable to grow. Which meant th...
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Pierre Robin Syndrome / Sequence.

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Now, not many people really know of Pierre Robin Syndrome, as it is pretty rare. 1 in 8,000 - 30,000 people worldwide are affected.  It comes in different severities, mild, moderate and severe. I have a severe case.  Below is taken from CLAPA (Cleft Lip and Palate Association) so you can gain a brief understanding. The Features of Pierre Robin Syndrome - Also known as Sequence are: Small Lower Jaw A baby with PRS will have a jaw which is noticeably smaller and more receded than those of other babies. This is called ‘mandibular hypoplasia’ or ‘micrognathia’. The smaller jaw is thought to be the cause of the other features of PRS, but because the jawbone continues to grow as children get older, it usually doesn’t need to be treated surgically. Breathing difficulties The smaller lower jaw means the baby’s tongue will be further back than usual. This means it is more likely to ball up and fall backwards into the throat, causing obstruction and therefore breathing dif...
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