This page was created to help Sophie in her fight with her debilitating disabilities.
Howick, Auckland
One of my best friends Sophie has been battling with her health since she was in year 7 when she was first diagnosed with Tourette’s syndrome.
She has severe tics, where she will punch walls during long and exhausting tic attacks, where she has broken her knuckles multiple times. Then later that same year she began to have non epileptic seizures, lasting anywhere from 1 to 22 minutes.
From then on her health only declined. She slowly lost her mobility, feeling in her body and is in unbearable pain 24/7. She is now diagnosed with 4 conditions. Tourette’s, FND which has caused her to lose feeling in her lower body, POTS causing fainting, and H-EDS has created the most amount of pain. Causing her to dislocate her bones if she puts to much pressure on them and pain hypersensitivity in her legs. She is slowly loosing her ability to walk.
She hasn’t been to school in over 6 months and in that time she was admitted to the hospital for three weeks for her pain. She’s constantly in and out of the ER for seizures and in the doctors office for various tests, blood works and scans.
Due to the severity of her conditions that are not typically debilitating her aids are not funded, the only aid she has is a borrowed hospital wheelchair. A new wheelchair would give her back her life, allow her back to school and to navigate her own home. She’s a wonderful girl and her disabilities have taken so much from her. This would give her back her freedom and her life.
Mum
The money will be spent on a new custom fitted wheelchair that is safe and compact allowing for easy use. If we don’t meet the target the money will be put into a savings account for the new wheelchair. Funds will be going to Sophie's mum Joanna,
So so grateful 23 January 2024
Many thanks to those who have given a koha via the page or in person, to those that have shared the page to their whanau & friends, plus those who have reached out with their support & advice, but of course lastly & most importantly the lovely Casey who set it all up & continues to support… we are so so grateful.
We have been able to purchase smart crutches from Oz (thanks Mosie) which means Soph is more able to control & limit her dislocations & falls. We have also purchased a second hand wheelchair which is self propelled and SO much lighter! It needs some work but is already 99% better!!
Thank you all for helping our daughter, we have finally made the progress, she is more independent around home & zips around with ease, she wants to start getting out & about again which is fantastic news!
There is still a long trek ahead with Sophie travelling to Hamilton to see a specialist at the end of the month, plus scans & other j appointments to investigate Nutcracker syndrome / May-Thurner Syndrome without medical insurance. We also need to modify the home to allow her to access everywhere in her chair without having to ‘butt shuffle’ up and down the stairs.
Please help us raise the money for Sophie’s treatment of hEDS & modifications necessary to get her back to some sort of functioning teenage life. Once again, thanks we are so grateful for all that you have done to support our life changing journey.
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