Supporting Mila and her incredible family through a lifetime genetic disorder, now cancer.

A little background on our beautiful girl. Mila was born with a very rare genetic condition called ADNP syndrome also known as Helsmoortel-Van Der Aa syndrome and is currently the only diagnosed case in New Zealand. ADNP is an extremely rare neurodevelopmental genetic disorder caused by a mutation in the ADNP gene and has affected every aspect of Mila’s development since birth.

More info can be read here…

https://www.adnpfoundation.org/adnp-syndrome-full-description.html

Then in March this year, Rach and Stu had a call no family wants to receive. Mila had a large mass in her abdomen. After major surgery to remove the main tumour, sadly the surgeons advised it was too risky to remove three smaller residual tumours.

Following the surgery Mila started her chemotherapy treatment which was delayed each month due to low neutrophils and multiple blood transfusions.  It has now been shattering for them to hear that tests have shown the treatment has failed to make an impact on her residual tumours and they have grown. A second surgery is coming up as they are now impacting on other organs.

8 year old Mila and her incredible family have had enough to contend with. But let's not focus on the not so nice stuff…

This bundle of cheeky joy has captivated all our lives in ways which only Mila can. Happy, funny, jokey, playful and never complaining. She has this innate way of communicating and connecting with her beautiful smile. She loves water, music and repetition, and has an amazing sense of rhythm. You Miss Mila (Meeks, Me me, MK an untold amounts of endearing names) make the world a more magical place.

There is also a side we don’t get to see.  The behind the scenes stuff. As aside from all of Mila’s “superpowers”, there comes challenges. Big Challenges.

Rach and Stu and her super cool little bro, Xav are tireless in their efforts to provide Mila with the love and support she needs. As you can imagine the pressure on Mila’s family both mentally and financially is huge. This is where we can hopefully help a little in, lightening the load.

If you are able, any kind donation will go a long way to help this family on Mila’s road to wellness and beyond.

A special thank you to Sarah Greer (one of Mila’s wonderful teaching assistants) for setting up a separate page shared with a close Dunedin school group, which can be viewed here. It is very much appreciated, as too are the generous donations.

https://givealittle.co.nz/cause/mks-journey