Family — where would you be without them?
I love my family more than anything. They have always been there for us every step of the way — through the really difficult times of which there have been too many to remember to the little achievements we have made together to get to $550,000 raised in less than one year.
I’m not one to sugar coat things — it took me 18 months of crying all day everyday and feeling very angry and mad at the world. I was sad and sorry for Chloe and for the lifestyle and friends our family had lost in an instant with the diagnosis of VWM for Chloe. Then within a period of a month, three things happened:
- I saw a youtube clip on a young boy named Taden Foss. Taden had VWM and was diagnosed at the same age as Chloe and had just passed away at 6 years old. Chloe was only 5 at the time.
- I saw a Facebook post called “Saving Eliza” — Eliza had a different rare disease to Chloe called San Filippo Syndrome and her parents in the USA made a clip that went viral and at that stage they had raised $500,000 in 2 weeks — they have now raised over $2million.
- The third was after 18 months of crying — I had a conversation with my Aunty and burst into tears 4 times in half an hour — she convinced me to see my doctor. I then started for the first time on anti-depressants. I have slowly weaned myself off them — but they helped me get through that period of absolute hell.
I showed the Saving Eliza clip to Grant, my sister Nicole and brother-in-law Gary and said “this is what we need to do”. We contacted Glen O’Neill, Eliza’s father in the States who gave us some tips on what to do to make the campaign succeed.
It then took us 18 months of hard work, most nights with us up until 1am to launch the campaign. Just to get the ACNC registration and DGR status took us 8 months of fighting with the government. Then you have the logo, mycause site, facebook, instagram, twitter, paypal as well as media to sort out. All of this on top of your child having a terminal illness, where if she catch’s a cold or bumps her head, it could possibly kill her. The stress on our family was and still is unbelievable.
The last year has been the craziest, busiest year of our lives — we have done more than 100 fundraisers and that can take it’s toll on anyone — but my family has been to every single one of them and I know that they are there for us every step of the way.
Although Grant, Gazzy and Mads were unable to be there to see me get my award, so are missing from this photo, you were very much with us — this award is for all of my family.
Written by Chloe’s mom
Note: Chloe’s mom has been recognized as 2017 Keira Local Woman of the Year see https://www.facebook.com/WINNewsIllawarra/videos/1656012484415488/
To help #findacureforvwm donate: www.savingchloesaxby.com
or make a donation via check to AFTAU — 39 Broadway, Suite — 1510 New York, NY 10006 — Attn: Joe Huber/Orna VWM research
here: : https://www.aftau.org/vwm