Dreams for Evie

We have deliberated over making this Give a Little page for a while now, wondering whether it would be the right thing to do. However, since becoming aware of Evie's ongoing medical needs, a lot of people have asked us whether they can donate money to help Evie. In light of this, we have made the decision to go ahead with the page.

Evie is now nine months old. She was born with several medical issues. She doesn't have a diagnosis yet so we don't know why any of this has happened, or what the future will be like for her.

Evie has very low muscle tone which makes her very floppy. She can't hold her head up by herself or do any of the physical things that typical nine month olds do.

She also has an oxygen requirement- she wears oxygen when she sleeps to keep her levels up. We had hoped that this issue would resolve over time, however this has not been the case.

She has feeding issues too, she can feed orally, but she has a mic-key button in her tummy to make sure she gets the calories she needs.

And finally, she has epilepsy- she has suffered seizures since birth and was seizing frequently until she was three months old. She's now on anti-seizure meds which are currently keeping her seizures under control- touch wood!

The past 9 months has been nothing like we expected it to be, in fact, far from it. It's been extremely hard to adjust to our new life, which consists of lots of hospital admissions, therapy, medications and tubes!

But rather than focussing on all the negatives, we like to focus on what Evie can do, rather than what she can't!

She's got such a cheeky personality... Her smile makes everyone's day, and she absolutely loves people!

I could talk about her all day.

We want to give her the best life possible and right now, one of the most important things is to help improve her posture and mobility. We are hoping to raise funds for Dynamic Movement Orthosis suits- a compression garment which will hopefully help her become more aware of her muscles and how to use them.

Needless to say, like most of her equipment these suits aren't cheap (about $2000 each), and unfortunately they are not funded. She will need a new one about every six months, as she's a growing girl!!

Evie has a Visiting Neuro Therapist visit her at home once a week, and also goes to Conductive Education in Hamilton twice a week. We have already seen positive changes in Evie from her therapy which has been amazing. So, we are hoping that the DMO suit combined with her weekly therapy sessions, we will start to see lots more improvements in her muscle tone and movement.

We'll be doing some fundraising in the coming months, sausage sizzles etc, as we want to be able to give something back to those who help us out. However, this page is to run alongside our fundraising events that we hope to run.

Any money raised will go towards the ongoing cost of DMO suits throughout Evie's childhood. Money will be deposited into an account we have made specifically to cover Evie's needs.

Please know, we don't want people to feel like they have to donate financially. Just knowing that people are there to support us means a lot :)

For more information about DMO suits, please see the below link:

https://www.dme.co.nz/dmo-suit

Thank you for taking the time to read :)