Health and Wellbeing Snaps 'n' Crackles

Zoe, Emme and Neurofibromatosis

January 17, 2017
Neurofibromatosis, baby, girl, baby girl
Neurofibromatosis, tumours, children, children's tumours,

Zoe with Emme as a baby

Zoe and I used to work together some years ago. We shared an office pod – two separate desks in one screened off cubicle area. We did quite a bit of talking over that time, got to know one another and shared quite a few of life’s ups and downs.

Fast forward several years and we find each other on Facebook and I am overjoyed to hear about the birth of both her boys and then her beautiful little girl Emme, and of course to see all the photo’s that she shared.

Neurofibromatosis, baby, girl, baby girl

Beautiful baby Emme

Neurofibromatosis, baby, girl, baby girl

Baby Emme sitting up all by herself!

You can imagine my devastation when scrolling my Facebook feed one day to see a post from Zoe advising of her beautiful Emme’s diagnosis.  In February 2015, Zoe and her husband’s beautiful baby girl was diagnosed, at the age of 9 weeks, with a condition called Neurofibromatosis type 1, or NF1. NF is an unpredictable disorder, causing tumours to form in the brain, spine, optic nerves, and virtually anywhere in the body. It causes deafness, blindness, bone problems, cancer and learning difficulties. It can result in numerous surgeries, chemotherapy and amputations, and it is incurable. NF can be mild or severe and there is no way of knowing which child will be affected in which ways.

Can you imagine the impact this disease has on a family?  In Zoe’s words: “The loss of the simple joy that comes from having a baby, the loss of hope for a bright and healthy future for your child. Whether Emme is ‘mildly’ or severely affected, or whether she loses her battle altogether, we will never be the same people again – the grief sits heavily on me as her Mummy every day, and the worry never disappears. She stumbles and we watch more closely for the next fall that may indicate a brain or spinal tumour, she cries and we wonder if she’s in pain from tumours along the nerves, her nose bleeds and we pray it’s not the high blood pressure they’ve told us could cause her to have a stroke at any moment. It’s soul-destroying and we have no way of knowing what her journey will be or how long it will be.”

Neurofibromatosis

The hope for treatment options and for a cure for her daughter and others like her is Zoe’s driver.  It’s the reason she keeps going and keeps fighting.  She works closely with the Children’s Tumour Foundation (CTF) and is Chair of the Queensland Committee for CTF.  She’s also Race Director for Brisbane Cupids.

Neurofibromatosis, little girl, two years of age

Emme turns 2!

Neurofibromatosis

Little petite Emme recently turned two (2) years of age.  You can read more of Zoe and Emme’s story HERE.  It was written in May 2016.

You can also read HERE about Lyla, another little girl with NF1.

Zoe and other parents of children with NF need some help and support. 

Through CUPIDS UNDIE RUNS in 14 cities across Australia on 19 February 2017 (Valentine’s Day weekend), they are hoping to achieve funding for better treatment options and lifesaving trials. Every day they are one step closer to a cure for NF and how soon that happens depends on funding for research to continue. Here is the link to Cupids around Australia:  http://www.cupidsundierun.com.au/

On a personal level Zoe, her husband and family hope that with further funding they could have access to the care Emme needs here in Queensland rather than cross their fingers and hope that an out of state clinic might take her, or having to uproot their family by moving south. If you live in Brisbane you could join Zoe’s Cupids Undie Run Team – ‘EMME’S CUPIDS’ – or no matter where you live you could donate and/or share the link.  Here’s the link to Emme’s Cupids:  https://cupidsundierun2017.everydayhero.com/au/the-brisbane-cupids 
At the moment they are $919.45 away from their target of $5,000. I would like to see them exceed the $5,000.

Please consider helping out in order to give these parents and children some hope for a brighter future.  Every little bit of help adds up to make a big difference.

You can find further information on Neurofibromatosis on the Children’s Tumour Foundation’s webpage HERE.

Ciao for now,

Linking up with Kylie Purtell for #IBOT

 

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  • Emily January 17, 2017 at 6:13 am

    Thank you for your care for your friend and her daughter. Thank you for also mentioning Lyla and her story. I can saying after living with this news for 7 years and the news of Lyla’s brain tumor for four years, the anxiety does get a little more manageable. I hope Zoe and her little Emme find that as well. I also wish them all the wonderful firsts and beautiful moments that they so deserve as family. And as always I am hopeful we can end NF.
    – Emily (Lyla’s mom)

    • Min January 17, 2017 at 2:02 pm

      Thank you so much for your comment Emily. It is a small thing I can do for Zoe and others like yourself walking through life with NF. It’s reassuring to hear that living with the anxiety can become a little more manageable with time. I guess no two NF experiences would be exactly the same but any little ray of hope is helpful I would think. I’m sure Zoe will see your comment and appreciate it very much as I do. It was my pleasure to include a link to yours and Lyla’s story. All the very best to you, Lyla and your family. I’m with you in the hope that there is soon an end to NF. xo

  • Amy @ HandbagMafia January 17, 2017 at 7:38 am

    I had not heard of this condition. It would be so difficult to live under that cloud; I’m glad to see your friend is still finding joy and remaining positive.

    • Min January 17, 2017 at 2:05 pm

      It sure would be hard living with the worry of NF. Zoe’s an incredible person and a wonderful Mamma.

  • Ingrid @ Fabulous and Fun Life January 17, 2017 at 8:27 am

    LIfe sometimes seems so unfair!

    I hope a cure is found soon!

    • Min January 17, 2017 at 2:06 pm

      I agree Ingrid. Life can be incredibly unfair sometimes can’t it? I hope a cure is found soon too. Be gone with horrible NF!

  • Jo January 17, 2017 at 9:19 am

    Such a terrible thing for a young family to have to bear. How brave Zoe is and how very proactive too. Thank you too Min for brining this condition to everyone’s attention via your writing and your blog. #makesbloggingveryworthwhile

    • Min January 17, 2017 at 2:08 pm

      It sure is Jo. Zoe is indeed very brave and proactive but knowing her as I do I am not surprised. I had never heard of this disease before either. What a dreadful one it is too. I hope they get enough funding for research so that a cure can be found and it becomes a disease from the past that you only ever read about in a book but never have to experience. xo

  • Leanne @ Deep Fried Fruit January 17, 2017 at 9:20 am

    I have never heard of this before. That is so incredibly unfair. No little bubba should have to go through such things. As a parent I cannot even begin to imagine how difficult this must be. Such a beautiful little girl.

    • Min January 17, 2017 at 2:10 pm

      I hadn’t heard of it before Zoe & Emme either Leanne. Totally agree that no bubba or family should have to endure this horrid disease and all the worry caused by it. Emme sure is beautiful isn’t she?

  • Nicole @ The Builder's Wife January 17, 2017 at 9:26 am

    Thank you both for sharing this story, it is a condition I knew nothing about. There is real value in education. I cannot imagine how difficult this must be for this family. My best wishes to all concerned. xx

    • Min January 17, 2017 at 2:11 pm

      Thanks Nicole! I can only hope my post will do some good. Thanks for your wishes for the family! 🙂 xo

  • Bec Senyard January 17, 2017 at 1:31 pm

    I’m so glad you shared this Min because I wanted to know more about Emme’s story. I have never heard of her condition. Life can change in just a moment can’t it? Our wish is always to see our children healthy and grow strong and Emme’s future maybe somewhat unpredictable at this stage. I hope they get the full funding they need. I’m off to head to the page to donate now. xx

    • Min January 17, 2017 at 2:13 pm

      Thank you so much Bec! Any donation no matter how big or small is so very much appreciated and will go towards making a difference for families living with this disease. Yes life can change in an instant that’s for sure. I’m hoping they will raise enough money to make a significant difference. xo

  • Jo @ You had us at hello January 17, 2017 at 3:23 pm

    Thanks for sharing your friend’s story. I too I never heard of this condition. Poor darling. Sending best wishes to the family and little Emma xx #teamIBOT

    • Min January 17, 2017 at 8:26 pm

      Thanks Jo! 🙂 xo

  • Denyse January 17, 2017 at 7:10 pm

    For all who have said they did not know about this condition before I understand. I first heard of it in 1980s when a student enrolled in our school and I saw the various challenges she had each day and how we needed to help her. Her mum also had signs of NF.
    There is a blogger who has been blogging for far longer than most and her name is Trish.

    Trish has NF and she blogs at My Little Drummer Boys. Trish and her hub have also done the Cupid’s Undie run. I know she has had more than her fair share of cancer diagnoses over the years but her determination and strength is to be admired.

    I add my words of sorrow too about the news of this little one’s diagnosis and hope, as I see here, she continues to receive all the hope, love and support needed.

    • Min January 17, 2017 at 8:32 pm

      I know Trish (well – online) – I’ve linked up with her for Wordless Wednesday for years! I knew she’d had various cancers but I never knew she had NF! Maybe I’ve seen the word but never knew what it was? I’ve always wondered how life could be so unfair to her and now I understand much better. She is an incredibly strong and brave woman and I know she is very heavily involved in raising money for the various causes. Thanks so much Denyse for your kind words for Zoe & Emme. xo

  • Sammie @ The Annoyed Thyroid January 17, 2017 at 7:11 pm

    This is a horrible condition, I knew about it from Trish from My Little Drummer Boys who has has NF and is a big advocate of the cause, and the undies run! I can’t imagine how difficult this must be for the family but I hope the run is lots of fun and raises those all important funds for this worthy cause. Thanks for putting this story in the spotlight, Min, because knowledge is power!

    • Min January 17, 2017 at 8:35 pm

      Denyse also just pointed out that Trish has NF – I never realised! I have linked up with Trish for Wordless Wednesday for years. Her various diagnoses all make more sense to me now. She’s one amazing woman and mother that’s for sure. I agree Sammie – knowledge is power. xo

  • Renee Wilson January 17, 2017 at 8:28 pm

    Ahh those poor families. Life can be so cruel. I truly hope they can find a way to get the treatment and care that they need here in Queensland. Both little girls will be in my prayers.

    • Min January 17, 2017 at 8:36 pm

      Thanks so much Renee. xo

  • Julia January 18, 2017 at 5:29 am

    A wonderful article.
    I know all too well the ups and downs that is NF. My daughter and I both have NF1. When she was diagnosed at 6 weeks I was devastated, I had hoped and prayed that she’d not inherit it. That was 30 years ago. She’s had her battles, brain stem tumours, struggles at school, fitting in, but she has persevered, and she keeps doing so. She graduated high school, went on to uni, did a TAFE course and is now a casual at one of our local libraries.
    I was a huge part of NF Endurance when we lived in the USA, and was thrilled when Cupids came downunder. I’m race director for Wollongong. We never know what NF will throw at us, and some of the more frightening things may never happen.
    Have a great run in Brisbane Zoe!

    • Min January 18, 2017 at 4:06 pm

      Thanks so much Julia for your comment. It’s so lovely to hear from you and learn a bit about yourself and your daughter. I am only just learning about NF1. I cannot imagine living with it … myself or someone I love. Good on you for all that you do for NF and I hope that none of the more frightening things ever happen for you or your daughter. Take care! xo

  • Zoe January 18, 2017 at 6:35 am

    Thank you all so much for the warm and heartfelt comments, and thank you Min for sharing our story. Emme’s diagnosis was life shattering and terrifying, but she is truly such a blessing in our lives and we just adore her. With your help we can raise awareness for this dreadful disorder. I hope and pray every day that we are one step closer to finding a cure for NF and that Emme’s life will be as full and healthy and happy as she deserves. Thank you again for all the love and best wishes for our girl. Zoe (Emme’s Mummy) xx

    • Min January 18, 2017 at 4:11 pm

      It was my pleasure to share your story Zoe, even though it is a story I’d rather wasn’t there to share! All the best for the run. I hope it is a fun day and that heaps of money is raised and put to very good use. Lots of love and protective healthy fairy sprinkles for your beautiful Emme and big hugs of love, courage and strength for you. xo

  • Trish January 18, 2017 at 2:58 pm

    Hi Min
    My son Sam and I , plus other extended family members have NF1.
    Thanks for sharing and raising awareness.
    This year is our 3rd Cupid’s Undie Run.
    Wishing Emne and all the kids have hope for the future.

    • Min January 18, 2017 at 4:19 pm

      Hi Trish – I’m so sorry that I never realised! I guess I just never read the right posts to get the whole story. I knew you’d had various cancers and I couldn’t believe how unlucky you were. Now I understand better but after what I’ve read and learnt about NF, I’m so sad for you & Sam, for Zoe & Emme, for Emily & Lyla, for Julia & her daughter and for everyone that lives with and is affected by NF. You are incredibly brave and such an inspiration. Enjoy your 3rd Cupid’s Undie Run and I hope 2017 is kind to you. xo