Sarah's Rett related expenses

My name is Sarah and I have Rett Syndrome, a neurological disorder, it is caused by a mutation on the MecP2 gene and it is generally not hereditary.  

I have problems eating and my mummy makes me blended foods which are given to me via a gastrostomy feeding tube.  I will try and eat most times but am unable to manage a lot as eating makes me very tired and fatigued.  When I drink I aspirate if I try to take more than a very small sip so my mummy gives me 99% of my fluids via my g-tube.  Until recently when my mummy decided to try putting the blended foods through my tube I was fed overnight a special formula via a pump for 11 to 12 hours with small feeds during the day.  

Now anytime I try to drink I aspirate on swallowing as I breath at the same time. This makes me very sick and need to go on further medication.  If I could only communicate with mummy better I would be able to let her know what is wrong that's why mummy is trying to raise funds for an eye gaze communication device. Other girls with Rett Syndrome are able to communicate very effectively with one of these devices so please help me if you can every $1.00 you can spare will bring me that step closer to being able to tell my mummy and daddy that I love them and when I am hungry, thirsty or not feeling well. 

I love to go swimming and to hydrotherapy, it gives me so much relief from the trembling that is a constant companion to my body.  I like to watch Elmo and the old wiggles, my favourite elmo DVD is Elmo has two hands, two ears and two feet. 

I also suffer from seizures but take medication which helps keep them at bay but there are times that I have a break through seizure  or two.  Sometimes I go very blue or purple just after a seizure as I forget to breath and it takes a lot of encouragement from mummy to get me to remember to breath again. 

I love when people speak to me when I am out with mummy in my wheelchair and give big smiles to those that stop and take the time to say hello to me.  People tell mummy I have a beautiful smile and lovely shining eyes, this makes me very happy.

Thank you for taking the time to read a little bit about me and your thoughts (and where possible donations) are truly appreciated.  

Perhaps one day my mummy will be able to take me on a big holiday before Rett Syndrome completely takes over my body, it will never take over my soul, determination and happy spirit though.

Donations

  • Pauline Biboudis 
    • $100 
    • 36 mos
  • Anonymous 
    • $50 
    • 36 mos
  • Goodlife Church Newcastle 
    • $420 
    • 43 mos
  • Retro Cristo +Friends 
    • $120 
    • 48 mos
  • Jo Cole 
    • $50 
    • 50 mos
See all

Organizer

Kim Dunn 
Organizer
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