urgent medical treatment for shavarnah
daughter unable to walk , extreme pain.needing to cheer her up . Rare condition
Auckland
My Daughter shavarnah 11, is in and out of kids first unable to walk, in extreme pain.This has been going on for 4 long months now, with possibly years to come!
she has extreme nerve pain causing major spasms, unable to touch hold her legs, unable to even stand. shes incredibly weak. and very very unhappy now. They - the pain team- say she has CRPS, complex regional pain syndrome or a form of guillain barre syndrome. but sadly her pain her symthons are getting worse - its slowly taking over her body. she needs not only medical specialist , But urgent therapy. therapy involving LIGHTENING therapy ($1300) , counseling with specialist who understand chronic pain syndrome and alternative therapies like all types of healing.
Sadly as of tonight, 8/oct 2017 BOTH shavarnahs legs and her left hand are affected , with extreme spasms, unable to touch the skin, extreme pain, not weight bearing , anger and depression due to a hard painful life. Shes on anitripulin and gabapentin which sadly have had little affect .
The faster I can get my girl help the faster hopefully her disease will leave her body. so i Have to act fast - I have to act NOW.
what she has is relatively rare - less than 50 children throughout nz have this condition - alot heal within a few weeks - sadly shavarnah is 1 of the rare children , where its not leaving her body.
They beleive she got a virus which got into her spinal cord causing her nerves to open up and be permanently awake. she needs treatment to turn her brain off , treatment from specialist trained physiotherapist who will help her muscles not wear away. because if they do - she cld not only loose leg function but have her legs amputated - it can get that serious.
SO please help my daughter shavarnah on her fight for her life - the fight to get her legs back.
deidre lock's involvement (page creator)
Im the mum praying, hopeing I can save her before she ends up in a wheelchair (which currently she has been on ft for 2 mths now) shes so unhappy.
my main focus right now is to do anything everything I can to help my daughters pain, not be wheelchair bound permanently and hopefully cure her. but I cant do this alone.Im exhausted . we need all the therapy help I can find. and since CRPS isn't well known in the medical world, treatment isnt a case for the gp , even a specialist - it takes a team of physiotherapists, pain management teams, therapist, counsellors and all other help out there. this takes time, travel, expensive visits to specialised therapist. Shavarnah can only see specialised people who know how to help her.
Use of funds
funds will go towards
finding a private second opinion as i feel she deserves this , as current treatments is to ignore let them settle down ! (yip blows my minds to )
I want to buy her a ipad..so when these days are with her, she can go on special relaxation apps and fun happy apps - to take her mind off her legs. to help her smile and hopefully relax.
if any funds available I wld like a trip for shavarnah and her special needs sister - something she can look forwrds to
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