Please help Zoe continue with the chance at a better quality of life...

Closed Cause page created in the Health category by Adam Jeffries for Zoe Jeffries


$16,614 donated

Given by 100 generous donors in 2 years

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  • Bump in the road...     23 June 2017
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    Unfortunately we have hit a bump in the road in terms of seizure control, and Mum is doing her best to get me back to a good place. I have become very sensitive to sound so school has not been something I can partake in at the moment. But I do love Mummy cuddles - like in this photo where we were hanging out - her kisses would make me laugh - they tickled!

    We are not too sure why my seizures are spiking...I have grown a lot in the last wee while, my hormones could be playing up - (I am 9 after all!) or there's the possibility I am becoming immune to the strain of Sativex. 50/50 (1:1) THC and CBD.

    I am unique - and don't like to make things easy!

    We are going to apply to the MoH (if specialist signs off) for a cheaper 1:1 option, and if that gets signed off - the hope is to access a 20:1 CBD to THC product. We feel that this would be the ideal product to try on me - basically a strain like Haleighs Hope in the US (for those that are aware of HH).

    It's not an easy road we tread...one foot in front of the other is all we can do...in the hopes that my journey will help make someone else's easier.

    #needingaccesstoarangeofmedicalcannabis #hopeful

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  • YAY REAPPROVAL!     01 May 2017
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    What a relief!

    Zoe has been given reapproval from the Ministry of Health to continue taking Sativex!

    We were pretty sure it would be approved, but you just never know do you...

    This page had been closed for a month - everything was up in the air waiting on an answer about the Sativex...and in that time we have been asked to reestablish the page, so that amazing people can continue to support Zoe!

    We are just blown away by the amazing support you continue to offer. Thank you.

    How is Zoe?

    She had a great break in the school holidays catching up with family she doesn't see very often. Zoe coped very well (considering!) with all the outings and late nights. The lack of sleep knocked the seizures about a bit - but not to the stage of requiring emergency medication! We're sure back in the days prior to Sativex she wouldn't have coped as well.

    Her health continues to be good (touchwood), with the occasional night requiring suctioning, but nothing major. She continues to blow us away with how she is day-to-day compared to how things used to be.

    She had another surgery in March under a GA to receive botox injections in her arms and feet/legs. She was then in calf-length casts for 5 weeks. This was to relax her muscles and help correct her ankles (they spray out into a mermaid tale like angle - hurting herself). It has helped. We just need to make sure she uses her AFO's always - well most of the time.

    Today Zoe is back at school - and hopefully behaving!

    Every day is never the same, but what we DO KNOW is that with SATIVEX, the days are BETTER!

    <3 <3 <3

    Thank you again, from US to YOU xox

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  • Ever wanted to buy a one-of-a-kind SUP board??     25 February 2017

    Early last year via Zoe’s Givealittle page, Bluemako Ltd kindly offered to make a custom paddleboard for Zoe to auction off.

    With all proceeds going towards her extremely expensive medicine!

    The result of that conversation is below!

    ***Board for a cause 2017***

    If you have been looking at purchasing a premium epoxy SUP board – try your luck at buying this one of a kind board!

    And know that in doing so, you will be helping Zoe buy her well needed meds! <3 <3

    Thank you to the amazing team at Bluemako for this amazing opportunity!

    Please share this auction on TradeMe and maybe bid so that Zoe can continue to take Sativex!! Thank you :)

    http://www.trademe.co.nz/sports/surfing/stand-up-paddle-boards/auction-1268257289.htm

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  • Bring on 2017 :)     30 January 2017
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    It's a bit late...but Happy New Year!

    The following was posted on Zoe's Facebook page - but for those not on there, here it is :)

    What a ride 2016 was!

    These pictures [this picture - givealittle limits us to one picture on am update] were taken after a massive meltdown this morning.

    Why was she having a meltdown? I believe because I put a necklace on her that she didn't want!!

    Zoe is certainly more aware and expressing herself, and letting us KNOW what she wants and when she WANTS it! The trick is to work out WHAT that IS. She will go blue screaming and stiffen up until the problem is resolved. It's a good thing she is more aware - mostly LOL. It can be SO frustrating for all parties involved at times :/

    We do our best :)

    We cannot say thank you enough...it doesn't seem enough. We are forever grateful to all the donors that help bring life to Zoe via her Sativex. The thought of never being able to afford the medicine is scary. Considering how much it has improved her overall health as well - for the first time EVER - in term 4 Zoe didn't have a day off sick from school!! Well apart from 2days when she had her botox - but that doesn't really count! UNHEARD of!

    We've removed one med - levetiracetam (often known as keppra) and dropped some more lamotrigine. Only has 50mg BD now - it was 150mg/125mg. (Actually it's now 25mg BD.)

    Her seizures are maybe 20 in a day? Sometimes less sometimes more? It's hard to know exactly when daily life itself gets in the way. But it is significant when you think to yourself - have I seen a seizure lately?

    Sleep.

    Ahh another massive thing. We actually sleep at night. Very rarely do I have to attend to her [touchwood] in the night. And if she wakes - or gets woken, it doesn't take too long for her to go back to sleep. It's massive. That in itself improves the lives of her whole family!

    Thank you again, with all our love,

    Zoe's family xx

    To view more pictures click here -http://tinyurl.com/zfbppfa

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  • Zoe has approval for another year!     31 March 2016
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    We are excited and relieved to say that Zoe has been given another year to continue to use Sativex!

    That's one less stress on our mind.

    The past few weeks haven't been the easiest for Zoe or us all really! Shés been a bit miserable and very tired. Having a plate removed from her hip hasn't helped the situation - yet! As you all know - it's all a guessing game for us. Her wound is healing really well though. The seizures have been a bit more frequent - which happens with pain - so we are hoping once Zoe has healed nicely, everything will plateau out a bit.

    We are looking forward to (hopefully) a much more settled year.

    Anything has got to be better than last years 8 drug trials right!!?!

    Zoe deserves a break. In fact we all do!

    Thank you again, SO MUCH, for all your continued love and support - it's overwhelming - and words can never convey how grateful we are...

    Love from

    Karen, Adam, Zoe & Zach

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  • You never know what's around the corner!     09 March 2016
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    That's generally the case with Zoe, and this week has been no exception.

    We got the call last Thursday afternoon that Zoe would finally be having her surgery to remove the hip plate from her left femur on Monday (just been).

    We thought we would have at least a week to prepare as per the norm, but alas that was not to be the case!

    Thankfully the surgery went smoothly - the recovery was tough to start with for Zoe - and her way of dealing with extreme pain in to turn as purple as possible! It's never nice to see your child turn that colour! Luckily the o2 was on hand!!

    We came back home yesterday afternoon - what a whirlwind trip! We still cannot believe we were driving back the following day - it felt like a week had passed.

    Zoe just blows us away. She is so strong. We are so glad we [with the help of everyone here] can offer her a better quality of life each day that passes - because with the Sativex on board she is just so much more calmer - and happier. Yes we have had a rocky month just been - and it's been hard to know if it has been pain from her hip plate or other things - but already 2 days post op - it just feels like she's relieved...<3

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  • Just maybe...2016 could be the best year yet!     30 January 2016
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    For those not following Zoe's Facebook page, here is the latest update :)

    Thank you so much again for helping Zoe's journey xx

    Prior to Sativex, and before trying all those additional drugs last year, we tried to wean Zoe from Lamotrigine. She did not cope well - she was hospital worthy. It was horrible. So I put her back to her original dose - and then all was right with the world again.

    Since starting Sativex, I have slowly been weaning back some of Zoe's other medicines. [Bear in mind it is extremely trial and error, with no real guidance - possibly because I am very competent and confident with what I am doing - and we have extremely good relationships with Zoe's doctors.] Tonight I penned some numbers. We have dropped daily:

    *1 drop of clonazepam

    *1750mg vigabatrin

    *250mg levetiracetam

    *75mg lamotrigine.

    The fact that we have removed all of this and still have an overall better control of seizures and a much better quality of life, is huge!

    Zoe currently has a viral infection (throat).Normally when Zoe gets a virus she gets a temperature - yet to really see one. [Her body appears to be stronger having the cannabinoids in her system. Everything one hopes would help! Either way I’m having to learn to ready her in a different way.] She's been extra moody and tired (normal for an unwell person) and the seizures are a bit more frequent - normal for when she gets sick, but still not to the extent of what was the norm.

    We have to take a moment to soak all this in - hence this post. Life is so hectic - all the monitoring and guessing and wondering - ie. are her increased seizures due to her being unwell - yes most likely; are the increased seizures due to the heat - yes also very likely; is it because I weaned too much - also possible...or maybe it's just her body adjusting to withdrawals of the meds her body has been so used to. Or maybe, just maybe - it's because she is teething! I tell you - it's not easy!

    Overall Zoe is much calmer, happier, and able to take in (and potentially respond to) her surroundings better. The seizures have definitely decreased still and overall the longevity is less too. Zoe is sleeping most nights through the night! (Huge!) Spasms are still very minimal also. We have been having a few screaming episodes—which are hard to judge if it’s seizure activity of not—either way I am monitoring that.

    School starts up again on Tuesday for Zoe— with Zach joining the school wagon too! I think Zoe quite likes that her little brother will be around.

    Fingers crossed it will be a good school year :)

    ?#?itsallabouttrialanderror?

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  • Merry Christmas to you xx     25 December 2015
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    Dear Zoe's angels,

    We hope you and your families have had a magical day filled with love and joy. Thank you to each and every one of you for allowing Zoe the opportunity to continue Sativex.

    The Sativex certainly continues to help improve Zoe's quality of life. Her seizures have significantly lessened, even with weaning back a bit on her current medications - that certainly says a lot in itself.

    She certainly seems more alert, is sleeping better at night, requiring less to no sleeps in the day time. We are dealing with more behavioural issues now which is taking a bit to adjust to!! Dealing with that, is clouding the fact that the seizures are nowhere near as frequent or as strong as they once were.

    She also seems healthier too.

    It has been nice to finally see more of Zoe's personality, when she is happy, the whole family is...and in saying that, Zoe had the best weekend of her life recently...next to no seizures all weekend, and that weekend was full of smiles and "talking"...it still feels like a dream...but hopefully we will get more days like that...

    Merry Christmas to you and yours, and we hope all your wishes come true in 2016...

    Much love from,

    Adam, Karen, Zoe & Zach

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$16,614 donated

Given by 100 generous donors in 2 years

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Closed on 31 Dec 2017

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Adam Jeffries

Individual
Bay of Plenty

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