Sorayas Squad

Soraya is my 3yr old little warrior. She was born with a rare brain disorder called absent corpus callosum, which has had a huge knock on effect in all areas of her development. We found out at 4m old that Soraya had been born differently, & as a mother to hear such a bleak prognosis, with the majority of questions being unanswered due to the complexity of the brain, was the most soul destroying moment of my life. Initially we tried everything the nhs would offer us, physio, OT, & when the seizures started medication. Until the seizures started we saw some progress, my little girl was giving it her all, but with seizures came medication, & with medications came the many side effects. As Sorayas progress slowed down I found that physio was less inclined to give us weekly appointment, they moved to fortnightly, then monthly, then every 6wks, & I felt this deeply as unjust, my daughter needed regular input that she was not getting. Then the medications were taking everything that my daughter was, cheeky, attentive, inquisitive, brave, interactive, & she was either asleep, or her body was cramping & she was crying, which they then gave more medication which basically gave her no quality of life. I had had enough, so I started to look into alternatives. That's when I found Anat Baniel Method, & that's when our life changed.  Since starting therapy Soraya has made so many improvements, too many for me to fit in this word count! But some of the most significant is that her spine & rib cage straightened, I was told she wouldn't ever put her feet flat on the floor, she does now & weight bears, I was told her hips were fused as her legs were always straight & stiff, her hips have full movement & her legs are hardly ever stiff now, her hands were always clenched, this is not the case anymore, she used to slump to one side, now she holds herself straight in supported sitting, on her eye exam before we started ABM she did not fix on the light or follow it, on our latest eye test she fixed on the light, followed the light & very subtly reached for it. I can't tell you how much hope this gives me for her future & hope is all that keeps us going! The reason this therapy is so different is because Sorayas issue is her brain & how her brain controls her body, & ABM is working to make pathways in her brain. Physiotherapy works on her muscles, to strengthen them, but strong muscles make no difference if those muscles don't know how to communicate with your brain. This therapy is everything to me & my daughter, it's our lifeline...our life...every year I do something to raise money which allows me to get a little head start on the payments & enables me to manage them for the rest of the year, I have had to give up my career as Soraya requires 24hr care, & it is just me & her at home, because of the format of therapy, which is 1 intensive week per month it costs £975 per month. So this year it's a skydive! Totally out of my comfort zone, but when you're fighting for your child's life you will do what ever you can. Thank you for reading our long, long story xx

Donations (0)

  • Richard Kent 
    • £10 
    • 14 mos
  • Iain Moffat 
    • £30 
    • 14 mos
  • Sian Carr 
    • £50 
    • 14 mos
  • Chris Winiecki 
    • £50 
    • 14 mos
  • Jason Morgan 
    • £20 
    • 14 mos
See all

Organizer

Zoe Dehaan 
Organizer
West Drayton, Greater London, United Kingdom
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