Welcome to Georgia's webpage. It has been created to keep family & friends updated about Georgia. Georgia was diagnosed with Sanfilippo A (MPS 111A) when she was 5 years old, she is now 11.Sanfilippo is a rare, genetic disease where an enzyme is missing to break down sugars in the body, resulting in a build-up in the brain & other organs, ultimately stopping normal development. Despite all this, she is a very happy, content little girl! She is our little 'miss sunshine' & lights up our world & that of everyone who knows her.

We are so lucky to have Georgia, she has taught us so much about life - firstly, to enjoy it & have fun! Never to take anything for granted & to cherish each day we have with her, our time together is precious and we treasure each & every day that we share with our beautiful daughter.

Life is not easy on the road we are traveling but Georgia has taught us just how precious each day is.
When she was born I dreamed of all the things I would teach her over the years.

Little did I know, she was sent to teach me.

Journal

Saturday, May 16, 2009 10:19 AM CDT

This update is long overdue! Can't believe it's almost 6 months since my last update! A lot has happened but I'll try & keep it brief! My last update was mainly about Georgia's awful 1st seizure, whereby she ended up being intubated in intensive care - since then, she has had many seizures, I've lost count, but approximately 10 over the course of 6 months - Georgia's seizures are full tonic-clonic ones, they usually last about 20 - 30 minutes & we almost always have to take her to hospital, as she can encounter breathing difficulties & she is prone to status seizures (continuous seizures). We've found this incredibly hard to deal with, you just feel so helpless & never know when the next one is going to happen, there is no warning sign with Georgia. We just go into autopilot when it happens, doing what has to be done, then the emotions hit you afterwards!

6 weeks ago, Georgia was quite poorly with a virus, then she had a seizure - on the way to hospital in the ambulance, she started fitting again. She was admitted to HDU, at our local hospital, then onto the ward 2 days later. Over the next 5 days, she continued to have 'focal seizures' (all on the left side of her body), then on Easter Sunday, when she woke, I knew something was terribly wrong - she was in status. She was taken back to HDU, heavily sedated with IV Phenyobarbitone, then transferred to Cardiff Hospital, via a 999 blue light ambulance - this was so scary & very emotional! She was kept in HDU & we were told that if they couldn't stop the fitting, she would need to be intubated & taken to ICU. As you can imagine, we've already been down that road, & were praying that this wouldn't happen. Georgia was in hospital for almost 3 weeks, kept sedated for 5 days, so her brain & body could rest, then we went straight to Ty Hafan hospice, so that she could recuperate & I could rest! We stayed there for a further 2 weeks.

Since the seizures, Georgia has lost her mobility, which is incredibly sad, but we've not given up hope! She is getting stronger day by day & her doctors are amazed at her strength & resilience. She is now able to stand & hold her body weight for approx. 10 - 20 seconds, which is amazing, considering that just 2 weeks ago, she couldn't even hold her head up. Also, she has started eating orally again, which is fantastic, this has been a slow process which we've been persevering with over the last 3 weeks, she's just finished a dish of trifle, so I know she's on the road to recovery! She never fails to surprise us, such a beautiful, brave little girl.

I hope to add some new photos, just as soon as I can figure out my new camera!

Please keep our special little friend Jasmin in your thoughts & prayers, she is very ill indeed & we hope & pray that she can pull through this.

Lots of love

Lou
xxxxx

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E-mail Author: lou_loo@msn.com

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