|
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
Tuesday, September 30, 2008 4:02 PM CDT I'm so sorry for such a late update!
Where has the time gone? The summer holidays just went so quickly - Georgia was well for the most part, though on occasions she had a nasty cough, although this was due to aspiration in her larynx (voice box). Once liquid gets in there, it lingers & causes her to have a horrid cough, producing lots of phlegm - it can be a real struggle for her to cough this up & it wears her out. As if that wasn't enough for her, she is just getting over a virus - this one is doing the rounds & causes a horrible chesty cough & cold, she's been off school for a little while & only went back this week.
Next week, (8th Oct) Georgia is going into hospital to have a gastrostomy. She will be admitted on Wednesday, have surgery on Thursday & all being well & there are no complications, she will be out on Friday. All very daunting & quite stressful, but we know it's in her best interests to have this done now.
We're having more building work done on the house - adaptations for Georgia's needs - a new entrance for her wheelchair, which will then take her straight into her playroom - sounds simple, but quite a lot of work involved, I hope the builders don't make too much mess & get it done before Christmas!
In July, it was Georgia's 13th birthday - I just haven't had time to put the photos together & onto her webpage! (only a few - click on 'view photos') It was a lovely day, made even more special by our family & friends who joined us.
Christopher was home for the summer, after leaving university. Now, he's moved out again & has started law school. He's thoroughly enjoying it, but is exhausted from intensive lectures & reading! Oh & probably from the occasional evening spent in the student's union bar! :)
Our special little friend, Jasmin, is in hospital & has been in intensive care with pneumonia, please keep her in your thoughts & prayers, for her to pull through this & make a full recovery.
Thanks for stopping by, please sign the guestbook!
Lots of love,
Lou
xx
Read Journal History
Links:
http://www.tyhafan.org/ Ty Hafan Childrens hospice
|
|
