Shining star come in to view
Shine its watchful light on you
Give you strength to carry on
Make your body big and strong
Born a man child of the sun
Saw my work had just begun
Found I had to stand alone
Bless it now I've got my own
So, if you find yourself in need
Why don't you listen to these words of heed
Be a giant grain of sand
Words of wisdom, yes I can~ #earthwindandfire#shiningstar#michellina
Today’s #shiningstar is the gorgeous Dixie. Dixie has 15q11.2 microdeletion 🌟💜🌟
“ I had a normal pregnancy & birth. We didn’t know that anything was wrong with Dixie until she wasn’t developing normally. At 3 months old she couldn’t move her arms or legs, or hold her head up on her own, she was like a little rag doll. At 6 months she still couldn’t roll over, had very little movement in her arms or legs. I asked for her to be seen by a paediatrician because her development wasn’t right.
As soon as she was seen by her paediatrician they started doing tests, blood tests, MRI, CT scan, lumbar puncture & finally they did genetic testing. Just after Dixie’s first birthday her tests came back showing that she had high muscle enzymes and 15q11.2 microdeletion. The geneticist then tested her dad & me. My test (Mum) came back showing that I also have 15q11.2 microdeletion. .
There have been many ups & downs along the way, countless hospital appointments & therapy sessions, more testing, a lot of medications & hospital admissions, but Dixie takes it all in her wonky stride.
Dixie now 3 & a half, started walking just after her 3rd birthday. She currently walks with a wide base toddler gait, she can’t walk far, after a while her muscles give out and she collapses. Dixie is non verbal, to communicate she makes a few noises & some signs. Dixie has a seizure disorder - which she is medicated for. She also has medication to sleep as she thinks nothing of staying awake for 3 days at a time!!
As well as all of this Dixie is autistic & has sensory processing disorder, she has very obsessive behaviour & can be quite challenging to deal with.
All in all Dixie is a very happy, loving, funny little girl, who is just developing at her own pace. I wouldn’t change her for the world. Dixie has made me a better person & taught me a lot about myself & other people. A blessing in disguise.”
Thank you so much Jessica for sharing Dixie’s story, talking about the challenges she & you face but also the joy she brings.
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