Thursday, 30 September 2010

Seraphinas dream wish....saga

Seraphina has never had a wish granted by a charity,so when our old keyworker suggested it some months back we jumped at the chance.As we hadnt got a WAV (for those of you who dont know what one of these is it stands for Wheelchair Accessable Vehicle) and so there was no way we could go out together as a family,the keyworker suggested a foldable buggy for use on daytrips and to enable us to go on holiday.

The paperwork was filled in by the keyworker and she chose a buggy for us saying that she knew a famil who had just had one of these buggys and she would bring it out to show us and try Seraphina in it.

The months drifted by and so did our chance of a summer holiday together, I had more or less given up on our application being successful. Then out of the blue a phonecall saying that Seraphinas pushchair had been approved and it would be delivered the next week! Wonderful I thought :)

When the pushchair arrived it was immediately obvious that it just wasnt suitable any longer, silly me had forgotten how in the last 12 months Seraphinas condition had meant that she had regressed from the level of development she had previously been at, extra tube 'attachments' had been added and more support was required to keep my little girl in a sitting position.
What had been provided was a standard 3 wheeler buggy with a normal 5 point harness and what was listed as a 'Medical needs bag' was in fact a simple net shopping bag underneath. Even the 'postural insert' was something more suited to a much much more able child who only needed mild support, not a child with movements she cant control, limited trunk control and who is prone to extensor spasms and Seizures.

I debated what to do...some people I suppose might have immediately listed it on EBAY and put the money towards a more suitable pushchair, far easier than anything else,but as a Christian I just couldnt do something like that.
To be fair Promise Dreams (the Charity who had funded this) were lovely about it.They ,thankfully had heard of Rett syndrome and the regression it caused and so said they would contact the Company (Recare) who had sent the pushchair and explain the situation and ask for a refund which could then be put forward for another pushchair or another 'dream'.They advised me to do the same.

I phoned Recare and,full of apologies I explained the situation (though with hindsight I dont know what I was apologising for....Im sorry my child has Retts and not 'just' cerebral palsy as before? Im sorry she has regressed and is much less able than she was and much more sick??
They asked me to put in writing why the buggy wanst suitable and sent me pictures of the only other (and equally unsuitable buggy) and said someone would phone me on Monday.

No phonecall came...I tried phoning myself and was met each time by an answerphone. So I emailed them.
A few hours later I had a one line email saying they were waiting to hear back from Promise dreams.

Meanwhile I looked into other 'dreams' for Seraphina. I didnt have to look too far as Seraphina decided that evening to demonstrate to us that she understood far more than we had ever imagined.We had been trying to communicate with her by eye gaze since Retts had taken all her speech but one night whilst I held her Peppa pig toy and pressed the buttons for her I said 'wheres peppa pig?' and she took my hand and made my finger press the Peppa pig button! I laughed thinking it was a fluke and said 'ok then,wheres danny dog?' and got the same exact response.I felt tears pricking my eyes...could it be?
she say looking at me with her ands clasped and her steryotypical wringing movements getting faster. 'Wheres the umbrella?' I asked and then held my breath.she reached for my hand and I said 'No,YOU do it use YOUR hand', and I separated her hands. She looked at me again and then with what can only be described as utmost concentration she moved her hand forward shaking and twisted round so that her thumb rested on the button saying 'Umbrella'. I wish I had had someone with a video camera at this point.I exclaimed with excitement..'you really understand dont you!! and hugged my amazing little girl.From that tearful wonderful moment onwards I KNEW what Seraphinas dream would be...a communication aid,a means to telling people what she wanted.I felt like I had wittnessed a miracle.

So I trawled through online catalogues and brochures and phoned companies asking about different Communication aids..Tobii s32,touchscreen computers and Ipads the list was endless until I found a video on utube of a little Girl in America with retts who was using a communications package which loooked absolutely fantastic! Decision made. Now to get back in touch with Promise dreams.

I phoned promise dreams who were once again really polite and explained with embarassment that Recare had told them that in order to courier back the pushchair from us  and 'repackage it' (um why as it had been put straight back into the bubblewrap it arrived in) it would cost £200 which would have to come out of Seraphinas allocated dream money!!!

heartbroken is not the word, we looked online at trading standards whose website suggested that according to the distance selling regulations they should NOT charge for postage back OR repackaging...and CERTAINLY not £200!!

The pushchair was couriered back to them....the documentation from Parcelforce clearly stating that the cost was £31.88 hmmmm.....
I do wonder how some people can live with their conscience knowing that they have ripped off a charity whose sole aim is to grant wishes to life limited children and knowing that one little girls wish of being able to communicate has been dashed in order to keep their companys books balanced.

So for now Seraphina will continue to live trapped and restricted and I will live with the knowledge that she understands so much more than we thought and feel  as I do now,that I have failed my little princess. She blessed me with a magical moment in which she tried and succeeded in letting me know how much he wanted 'a voice' and I have failed to provide her with the means to do so.

Its not a good feeling.

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