Well since my last blog Chelsea went 40 days with no seizures – her world record ! Her 1st seizure was on Sunday and another on Tuesday, but it is mainly due to a virus she had. Hopefully as she is on the road to recovery the seizures stay at bay. Well we have our fingers crossed.
We have seen our physio and she has suggested a standing frame, which is great – exciting that we are getting Chelsea up and ready for walking. Not so exciting is the fact that they cost around $3,000 . Yep, you read right $3,000. Oh dear well this Fundraiser – Champagne Breakfast in April is definitely going to help cover the costs for this frame. Information is on the tab on the right of this website. I have been so busy asking companies for donations of prizes for the auctions and raffles, as all proceeds from those auctions / raffles will go directly to Chelsea. So far we are on the way to an exciting event, and hopefully can pay for Chelsea’s standing frame and some therapies!
Well well well I received a disappointing letter today, notifying me that Chelsea is not legible for the ‘Better Start’ package. This is a funding package for children diagnosed with Cerebral Palsy, Downs Syndrome, Fragile X Syndrome, moderate or greater vision or hearing impairments, including blindness. The package is used towards much needed therapies and equipment. I sent in a letter asking for special consideration and was declined. What makes me angry is that the package is not individually accessed, so kids like Chelsea fall through the cracks and get NO extra help, as she is not labelled with 1 of the above syndromes. Very unfair.
I find it discriminating, that my girl cannot access the package. Chelsea and so many other disabled children need extra assistance, Chelsea requires a standing frame, next will be boots, more physio, speech therapy etc all this equipment and therapies we pay for from our pocket and the sunshine butterflies account we have set up.