Hope Love Cure

A reason to Hope! miracles happen 💜

Wow and thank you! our little family so very grateful to those who  called and messaged just to let us know of the report aired on The Project last night, on hearing details of little Niki's story at first I felt deflated another example of a treatment Piper is unable to have, another option we'd investigated queried and crossed from our list. Surgery not an option for Piper as it is unclear which part of the brain the activity is coming from the varied seizure types also adding a degree of complexity... We watched and listened to this beautiful  little girls story, she's talking and walking although the difference may be that Niki developed seizures from two years of age the chance to develop and learn these skills came first before seizures and medications,  although children who have had this procedure and developed these terrible disorders from a younger age have indeed learnt to walk, talk and eat! They may continue to require aids and therapy although these children are no longer completely dependant on their carers, 

Piper sits in her chair as a fly buzzes around her little face landing on her eye, I just wish she could shoo it away     A few days ago piper woke with a huge bite on her leg it was inflamed raised and blistered and I feared it may have been a spider, we returned from the doctors with  yet another medication to add to the mix these thoughts of did she feel what was biting her, was it burning or itchy we will never know? Piper can not itch, she rarely crys, her body unable to regulate its own temperature, the feet and hands may be quite cold  although a fever may be brewing, 
I wish piper was able to tell us when something is wrong, rather than having to stumble across it.
To have any minor movement or improvement would be incredible we continue to pray for a day in which this happens. 
If we could eliminate the seizures surely our little girl could too progress.
Back to little Nikki :) I tend to type too many thoughts some times ;) 
This story had us on the edge of our seats this beautiful  little girl has not had a seizure for three weeks!  since part of her brain was removed! Remembering that Nikki had hundreds of seizures a day! 
Nikkis story brings us the most wonderful amount of hope!
We pray this precious little girl continues to thrive πŸ’—
The  similarity between Niki's story and ours is they too had numerous EEG's and MRI's  that showed little explanation of where the seizures were coming from although it seems Dr Gary Mathern Was able to provide and find this!
 Our concern for Piper is the variety of  daily seizures, to  pin point one part of the brain may not be possible,  although this is certainly worth investigating, we too plan to send footage of Piper's episodes to Mattel Hospital just as the Atwood family we can only try. each day is another lost as we desperately seek treatment along with a better life for our purple princess Piper πŸ’œ

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11.11 | 07:44

hi, my name is Lexi Crutchfield i go to school with Willow, i wish you all the best and i hope piper can become the best she can be.

22.05 | 13:21

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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

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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