Once again our neurologist is not overly suprised by Pipers regression, although those little knowing eyes and smiles were somewhat of a surprise! It is indeed as though our little girl is trapped within
her own body! She listens, she follows with her eyes, she's aware of her world, just unable to join it!
We are aware we have exhausted almost all options, our Doctor quite keen to try one last anticonvulsant which may prove to help although may
also prove to be fatal should Piper have a metabolic condition, once again the risks must be weighed we are told every day is potentially fatal for piper, we are asked if we are prepared to try this option! I turn to my sister once again, as I say to
our Doctor ..."We haven't anything left we need to try we need to know we've done everything possible and if this is what you think we should do we'll do that.
This of course can not be done without the support of the entire medical team,
our Neurologist will now liaise with the metabolic team in attempt to gain support in this trial,
Another option although quite invasive which also comes with risks is muscle/organ biopsies we have spoken of this before although we were not
wanting to put Piper through this unless it was absolutely necessary, I know I've mentioned many times before I do not want to know the diagnosis, I do not want to count the days and wait for the next stages of regression, I want to push towards each day knowing
its a new day with new possibilities, new chances for Piper.
As much as I believe this as much as I want my baby girl to get better there's now a real possibility she won't, I still believe in miracles and I believe we may have a chance at ours,
although if a biopsy can tell a story or give direction into our lives then I feel it may be worth it. I now feel it something we need to do.
We need to do everything possible. Research continues for Piper,
DNA has been
sent to both Boston and Seattle and although testing continues there is the possibility that answers may never come, she is as they continue to say quite a complex case!
There is however another treatment outside of Australia, a chance for
an improved quality of life a hope for a better tomorrow! Nothing is ever guaranteed but whilst there's hope! How can we not try.
I have been in contact with America, I have spoken to the father of a child suffering hundreds of seizures a
day now reduced to a few per month and now able to walk, able to communicate with his family, this child seven years of age received stem cell treatment in America at just eighteen months of age,
If Piper has the condition she is thought to
have mortality rate is that of cancer, these children will not see past their teenage years.
I now need to know!!
Our amazing family and friends planed to have a fundraiser for Piper at the time I felt completely overwhelmed,
I felt terrible that we should have to ask others for money,
I now realise without this amazing support, without the generosity of others options as this would never be achieved there is just no way we could possibly dream to help piper in
this way!
Treatment alone comes at a cost of $30,000,
Discussions with our occupational therapist and trips to Melbourne suggest a wheel chair
will need to be considered for piper in the very near future,
of course for Piper to be able to sit in a chair she would require a harness and supports boosting the cost of a chair into the vicinity of $50,000 I can not believe this is the cost of a wheelchair! a piece of essential equipment, it's just terrible
that everything to do with disability comes with such a massive price tag, how is anyone able to afford essential aides simply to assist their daily life, it is so incredibly sad.
Our beautiful team in Early Intervention work tirelessly to apply
for funds in order to support us through our ever changing needs, most recently we have had Piper assessed for a specialised shower chair, as lifting piper to and from the bath tub has become so difficult, my back constantly aching.
The
list never seems to end each day another realisation another recommendation, a lovely man from archicentre in Melbourne paid a visit to our house last week and gave us recommendations of how our bathroom could be modified in order to suit pipers needs both
now and in the future! From taps to door widths, rails and stands, positions of power points, non slip surfaces the inclusion of our toilet into the bathroom, so many little things to potentially make such an incredible difference and ease to everyday
life, so much I had not even thought of.
Mr John Burfitt has given us the most amazing start spending hours shaking his can in locations around our home town of Mildura this community support has already raised $10,000 for our little girl we are
well on our way! heading towards treatment for our little girl and a quality of life she so deserves xxxx thank you! To all who have given their time, funds and support to Hope for Piper.
Love light and thanks
Summer Michael Willow & Piper Sydney Pain/ Our Purple Princess 💜