Hope Love Cure

Thank you for believing in Our Purple Princess Piper

Gosh things are racing ahead, I find it hard to find my feet.  There is a mixture of excitement, anxiety and hope.

 

We never know where life will take us, some opportunities we could only dream to receive, as time has passed we have witnessed wonderful milestones - Piper lifting her head, propping onto her elbows, progressing to a standing frame, the exchanging of objects from each hand, the grasping of toys and rolling across the floor in search of ankles and attention, and now we watch the deterioration the diminishing strength that to me makes absolutely no sense, how can our little one raise her hands and feet in the air bring her foot to her mouth and yet somehow loose all ability when placed in an upright position. How is this so? I realize working against gravity will always make things more difficult although really!  This is a little girl that can pull at my hair and feel for my face, why cant she control her hands to grasp to hold, her arms to hug.  Why must our silent angel wriggle in excitement yet not be able to speak! Why must she lie and wait for the world to come to her when she only wants to be a part of her world,

Why must she wait for other to see the fly that lands on her face, the leg that hangs from her footrest, the tear that falls from her cheek.

 

Why cant she hold her little head high rather than continuously be supported into an upright position

 

We understand when her eyes say help me. We understand the conditions and days where Piper is at risk, we know how important it is to stay away from Piper when we are unwell and the catastrophic effect the smallest infection could have to her health, we understand the reasons why we must strap her feet, give her meds and syringe her feeds, we understand the reasons why she is unable to create bowel movements, to swallow and some days to breathe, we know when to administer emergency medications along with seizure first aid, we know the hospital drill the things we’ll need, the questions they’ll ask, the people we’ll see, the tests they’ll call for and what the outcome will be, we know after hours days and weeks we’ll leave the same as we came, only a little more resilient and wondering if we will ever really understand any of the above.

 

What we are embarking on is the path of modern medicine, so sophisticated yet still remains in its infancy, by the time this treatment is approved and trialed in Australia it will be too late for our little girl and whilst this treatment cannot change the condition itself or degeneration it is a chance for a greater quality of life, a chance to create new neuro pathways and repair damaged cells.

Stem Cell treatment has the potential to bring strength, speech and seizure control, improve cognition and gross motor development, as I read these capabilities I pray for even the slightest improvement in any of these skills, to allow my baby girl to sit, to once again roll or gain head control, allow her to feed from a spoon, to again use a standing frame, to take the seizures away.

 

Perhaps we can only dream to achieve any such milestones. There are many who have received their miracle, taken that chance against the odds, baffled the medical world and have witnessed abilities never thought possible.  A sign of hope in a desperate situation, This is our Chance! 

 

We finally have our passports!!  Visa applications have been sent for approval, flights and accommodation arranged for China, with the help of our Hello World Consultant, we have two of three airline accepting of the cares Harness a wonderful suggestion to use a neck brace supports and prevents pipers head from flopping forward, so now a travel plan finally in place for Piper’s comfort. J The concern now is transporting a month supply of liquid formula and medications through customs, although I’m hoping a supporting letter from medical specialists may less complicate this issue.

 

Yes there is always something :) 

As I transfer Piper’s funds for each stage of our journey it is never far from my mind of how our chance came to be,

How to us this treatment could only be envied, how fortunate we thought were those able to try every possibility.

I could never have imagined the incredible support that would soon be for our Piper.

We will forever appreciate the community support that allows us to try for our little girl. We can continue to wait and watch the deterioration the effects of this illness unknown, or we can try to improve the quality of life and do all in our power to discover the illness that is taking our baby away.

You have made this possible, so many businesses throughout Sunraysia, so many individuals, so many families! The kindness, the heart of our community - Thank you again for believing in Our Purple Princess Piper! Thank you for giving us Hope!

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Skye Sparkes | Reply 23.03.2014 12.46

We don't just believe in Piper we believe in the ability of her amazing family to never give up the fight. Love you all.xxxx

Shez Baldwin | Reply 21.03.2014 23.16

Back again! I have a lot to learn with this! Our friends would be only too happy to meet with you if possible. Think about it they are beautiful people love sh

Shez Baldwin | Reply 21.03.2014 23.14

God bless you all. Our thoughts, love and prayers are with you all. Please let me know where in china you will be we have friends in china and they will be the

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Latest comments

22.05 | 13:21

Get Physiotherapy Equipments for instant pain relief
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07.02 | 09:55

Oh Summer, you are doing an amazing job with Pipes & all of your family. Keep at it. The same goes for you too Piper. Loads of love from over here. Rikki. Xxx

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06.02 | 05:38

Piper is one tough little cookie, I have no doubt at all that she’ll continue to grow and surprise us all. Love you Princess πŸ‘‘ Piper. πŸ’œ

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13.10 | 11:42

Love yo piper to the moon and back

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