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Support Jules with brain surgery

$28,329 of $85,000 goal

Raised by 261 people in 2 months
Created November 6, 2018
I am usually the one rushing to people’s sides and offering love, support and assistance. I have always been of the mindset that if I have it, I can share it or give it.

Now I find myself having to write my story and reach out to friends, colleagues and the greater universe as I am in need of support as I prepare for brain surgery on the 6th Dec 2018.

I am a single Mum with a little boy who is just 2 years old.  Unfortunately, my partner passed away just a few weeks before our son Madin was born.  The last couple of years have been tough but nowhere near as tough as the last 5 months as I face life-threatening health issues and prepare for brain surgery. 

Here is a little of my story:  In August 2018, I presented to Emergency with stroke symptoms. I was referred to the Stroke Clinic at Royal North Shore Hospital, Sydney.  During the consultation with the Professor and while looking at my brain scans there was an incidental find of three intracranial (brain) aneurysms. 

Left side: 1 x 8mm and 1 x 4mm. Right side: 1 x 2mm. 

Anything over 7mm is deemed at high risk of rupture and surgery is recommended.   There are many causes for aneurysms and mine could be hereditary as my Great Grandfather passed away from a cerebral hemorrhage.

Aneurysms are present in about 2% or more of the adult population and multiple aneurysms occur in 10% of these.  A cerebral aneurysm is caused by a weakness in the wall of the brain artery.  They are more common in women than in men.  * Source: Brain Foundation Australia

Since the first hospital visit, I have presented to Emergency another two times with stroke symptoms.  On one of those occasions, I was admitted to the stroke ward for several days and I was diagnosed with a neurological disorder, on top of the aneurysm diagnosis. 

I have had some other incidental finds and I am currently experiencing a very high white blood cell count and platelets that have been rising now for 2 months. I am waiting to be given an appointment with a haematologist and oncologist at RNSH. I sadly cannot afford to see a private specialist.

I have opted for a craniotomy and clipping for my 8mm aneurysm.  The clipping option is usually favoured in younger patients as it gives a more permanent solution and a longer life expectancy.  For those of you who don't know what this is, here is a little explanation (I hope it doesn't make you queasy).

An incision will be made behind my hairline, then a section of the skull bone is removed.  This gives access to the lining over the brain. The lining is then opened to expose the brain surface.  Under a microscope, the aneurysm is carefully separated from the normal blood vessels and the brain. The metal clip (like a clothes peg) is attached to the neck of an aneurysm.  This keeps blood from entering the aneurysm.  As a result, future bleeding is prevented, and the brain tissue is protected from further damage. 

The bone plate will be securely put back into place using thin metal plates and screws and the wound is closed.  The metal plates and the clip will remain in my head permanently although the bone plate will heal over 6-12 months. 
 
They can only operate on one aneurysm at a time as it would increase the surgery risks, which are:

* Stroke.
* Loss of sight in my left eye.
* As language sits on the left-hand side of the brain, there is a risk of loss of language – this means speaking, reading, writing, typing.  Lastly, temporary loss of memory.

The risk of not having the surgery is much higher, as the neurosurgeon’s words to me were that a rupture would be catastrophic for me.  I have been on a waitlist for just over 60 days and I received my surgery date today 6/11.  The operation will be on the 6th Dec 2018, which is just a month away,  This time will fly by and before I know it, it will be time to face the fear of such a serious operation33546514_1541506408584860_r.jpeg33546514_1541506726889990_r.jpeg.33546514_1541506358895690_r.jpeg

My recovery will be long, if there are no complications during the surgery or after the surgery, my recovery will hopefully look similar to this:

·     1 week stay in hospital (ICU and stroke ward).  I will be released from the hospital just 2 weeks before Christmas. 

·     6 weeks of bed rest, where I will need help to look after my son, and myself.  I will need to have rehab and I will have Neuro Fatigue as my brain recovers from the surgery. This can be ongoing for up to a year.

·     At 3 months, I can hopefully look for some part-time work, ideally 1 x 4-hour days for 6 weeks and build up to 2 half days and so on. 

·     Within 6 months to 1 year I should be fully recovered and working full time again.

 Unfortunately, I am not out of the woods with this one brain surgery as I have three aneurysms and I will have to carefully watch the two that remain. This will require some lifestyle changes to reduce stress and situations that could increase rupture risk. I will be looking for treatments that could perhaps help me shrink the two that remain. It is rare, but it can happen. I really do not want to face brain surgery another two times.  (Aneurysms grow on average at 1mm a year).

 For those of you that know me, you know I live my life to the fullest. I go after my dreams and I am full of love for everyone.  I am warm and friendly, and I am always ready to help others.  I can be cheeky and love to have a good laugh.  I always look for the positives in situations and I am a strong, independent woman. I can say with my hand on my heart that the finding of these aneurysm has hit me hard and I have been on an emotional rollercoaster.   

 My biggest achievement in life is my son Madin.  I never thought that I would get the chance to be a Mum and in my mid 40’s the universe gifted me with the most beautiful little boy.  He is my life, he is my power, he is my world and I cannot leave him. He is just 2 years old and I would give and try anything to ensure that I am healthy and able to be the strong, healthy Mumma he deserves.  The love I have for Madin is beyond belief and seeing Madin’s little face every day is what keeps me going. 

 I am reaching out on this platform to ask for help as I am not able to work right now or for some time in the near future. Knowing that I could potentially reduce some of the immense financial pressure I am facing will help to reduce high levels of stress, which can potentially increase rupture risk.  To have some financial pressure released will give me the chance to fully focus on my upcoming surgery and my recovery.  It will give myself and Madin the support we both need to get through this. 

 Anything you can spare to help us will be gratefully received. The donations will come directly to myself and Madin and will help me cover medical and daily living expenses.

As I have just been given my surgery date and my surgery is now only a month away, the need is quite timely.  I would ideally like to get some very important things into place for myself and Madin before I am not able to do some of those things myself.   

Thank you for taking the time to read my story and for any support you can contribute either financial or other, I will certainly pay it forward in the future and I am truly grateful.

Much Love
Jules and Madin xxx
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Update 8
Posted by Louisa Sullivan
5 days ago
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Hi everyone, just to update you to tell you that Jules is making slow but good progress after her surgery. Thank you again for your generosity.
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Update 7
Posted by Louisa Sullivan
14 days ago
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Just wanted to say thank you to you all for your kindness and generosity to Jules on this journey. She has had her brain surgery and it has gone well, no complications and she is recovering in intensive care unit. Thank you for everything.
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Update 6
Posted by Louisa Sullivan
14 days ago
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Hi everyone, just wanted to update you all as you have been so kind and generous on this journey with Jules. She has had her surgery, it went well, no complications recovering in intensive care unit now. Thank you again, you have all been incredible.
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Update 5
Posted by Jules Smith
18 days ago
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Happy New Year! I am starting mine off with a bang, that's for sure. As I approach my surgery date (again) 7th Jan 19. I wanted to put out a very quick thank you to some people I know and some strangers and businesses who have been incredibly helpful in the past few weeks (in no particular order):

* Beverly Hills Montessori Christian Early Learning Centre. For taking Madin in and being so accommodating and helpful. I know you will take good care of my boy when I am in recovery.

* Maia, Vic and Jonah Lalwani for taking us in for 'Phase 1 recovery'. You guys are amazing, I don't even know how to thank you enough.

* Sam and Dani Birmingham - for looking after us and taking us into their loving arms when my surgery was postponed. Thank you Samberry and Danma. We love you.

* Jacqui Holquin - for all that you do for us, always. We love you.

* To Louisa Sullivan, you know how I feel about you. There are no words, I am crying even as I type this, my heart is so full of love for you. Thank you for offering to be Madin's guardian (just in case) and to look after me (just in case) and for taking on all the pointy end of this brain surgery business with me. There are so many things in life I could not have done without you by my side. Thank you for holding my hand through life. Two words - gold shoes. I love you Lou xxx

* To Sonia Mauri, Lou (as per above) and Aarti Benie who are my CaringBridge administrators. Thank you guys so much for taking this on for me. It is going to really help me out. I love all of you so much and I think we should all be in Goa to celebrate my recovery in Nov/Dec 19 - Jan 20.

* To Jess Samuels, who has set up a room in her flat in Goa for us to stay in once I am signed off to travel. I do not know when I will get there but I am going to get there. I do really hope we can spend some time in recovery with you there. We love you babes.

* To all my beautiful friends in Goa (you all know who you are) who message and call and are ready to help us when we can get there. Thank you, I know you have my back. I love you all so much, I feel you in my heart. I will see you all soon.

* Tamsin Warren (Neuro OT) at NeuYou Rehab, a stranger who saw my GoFundMe and has offered to work with me to help me get me back on my feet and at no charge. Thank you, I am so grateful as it is so important that I am physically strong. Hand on my heart Tamsin. Please support Tamsin if you need physio. www.neuyou.rehab

* Little's child restraints who waivered the fee to install a car seat in Maia and Vic's car for Madin to be ferried around. Again this is very generous as I do not know anyone at this company. www.littleschildrestraints.com.au

* Happy Endings Hair Studio, to darling Daniel Skinner who gave me (donated) a gorgeous new cut and colour to help minimise how the surgical shave and the Dr Assaad special (floating fringe) will look. I feel amazing, thank you. Photos to come. If you are looking for an amazing cut and colour in Sydney, please call Daniel.

* To Deborah Linwood (lawyer) and Kerrie Batchelor (Paralegal) at Teece Hodgson and Ward Solicitors who prepared my will, POA and enduring guardianship and guardianship for Madin pro bono. Thank you. These are such important documents and I am so relieved that they are in place now. www.teece.com.au

* To Stella Thorndike and her old boss Tom, who arranged the pro bono lawyers, thank you, guys. I am really so thankful. It means so much to me to know that this is all in place and that both my baby boy and I are protected as per my wishes for us.

* To the lady who gave me a travel cot and mattress (in the most amazing condition) thank you so much. You are incredibly thoughtful and generous.

* To Vanessa Rosa, thank you so much for lending me a car seat for Madin. It is in incredible condition and we will return it in the same condition. Thank you so much.

* To Alison de la Cour who helped me with payment for some expensive haematology blood tests and been an amazing support for me as I go through the process of having some difficult tests done - which by the way are negative. If I could drink champagne now I would be having a bottle. Thank you, Alison, (and Simone for introducing us).

* To Rob Marston (a new friend) who flew all the way from Bryon Bay to take me to the hospital, he borrowed a sportscar and came with his arms filled with gifts and flowers. I will open the gift you gave to me that day when I go to the hospital this Sunday. Thank you, darling, I am so honoured to have this new friendship with you. Thank you for also teaching Madin to swim and all the things you do for me. Way too many to list here.

* To my Mum and family who will look after Madin when I am in the hospital, thank you all so much. I am sure he is going to have a great time, playing football and cricket and swimming. Please send me photos daily. Thank you for taking Madin, I know he will be ok and I can focus on getting through this surgery and back home again.

* To Esther and Djuilan who are helping me with some things in Singapore. Thank you, guys. I love you both so much.

* To everyone who has donated to my GoFundMe, some of you are friends and some of you are strangers (new friends). Thank you for all the shares and contributions. Thank you all so much my hand is on my heart. I have sent everyone a personal message to say thank you and I really do mean it. This fund has helped me so much already and it will continue to do so. I am so grateful. You have all been so thoughtful and kind. Please keep sharing it wide and far. We have a long way to go yet.

* To everyone who has accepted a task on CaringBridge, thank you and I will see you soon. There are still many more opportunities and tasks available and I will need a lot of help and support. So please do what you can, every little bit goes such a long way. I am really very thankful for your time and love.

* To everyone who has reached out from Sydney and Internationally to offer help, love, support and friendship thank you. If I have forgotten to mention you personally, I am sorry. it is a long list and I have been trying to keep track of everyone and everything. I know in my heart who you all are and every message, call and offer of help I will carry with me all my life.

I am grateful, I am blessed, I am loved and I am conscious of my life and ready to fight my battle.
Love Jules xx
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$28,329 of $85,000 goal

Raised by 261 people in 2 months
Created November 6, 2018
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