Eve's Journey Home

Hello Everyone!  

My name is Eve but my friends and family call me Evie.

 I was born with Trisomy 3q.  It's a syndrome defined as a rare disorder involving duplication of the long arm (q) of chromosome 3 which results in various anomalies.  I don't hear too much about it from my family except that it's very rare and what I have makes me super unique!  I'm only the 3rd known case in the world!  The other 2 being my uncle Daniel & older brother Logan (Both of whome i'v surpassed in age.)

Together with my Gramma's,  we would like to share my story and raise some funds for my Mommy. They've been through so much and continue to spend so much time caring for me that sometimes I wonder how she does it and keeps on going!  My Mommies friends say it would be practically impossible for the average person and how strong of a women she must be.  So, I want to be the best daughter i can be and help them out!

I was born on Feb 4th, 2015 and since then have required many procedures at the Stollery in Edmonton.  I am currently staying here in the NICU where i have been since the day i was born. At this time I am waiting to grow bigger so I can undergo an operation to have a tracheostomy placed as i have acrittical airway.  The Stollery is the most amazing place with the most loving of Doctor's & staff!  They have supported me since day one and have given me the chance to prove myself and fight for my life!  Unfortunately, do to my rare syndrom, set backs from my heart repair and the issue of my airway and underdeveloped lungs, my stay has been extended although we all believe I am on my way to recovery.
My parents moved out to Edmonton from Prince Edward Island a few months before I was born, when they learned that I was going to be special.   My Mommy comes in everyday to spend time with me and hold me for snuggles when we are aloud. As you can imagine, it's near impossible for mom to maintain her small at home business (She started it so she could stay home with my big sister Eve and was her plan for me too).  It worked out well for her then but my Mommy & Daddy have decided to live in seperate houses now and Mommy is having trouble finding time to work and be with me and care for my big sister. My Mommy is here every minute she can spare. But I understand she needs to spend quality time with my big sister Eden to.

My Mommy had to slow down on her business because she wanted to be with me all the time during my first few months in NICU as it was pretty up and down for awhile.   It's also hard for my Daddy who works long hours and and doesnt get to see me as much as he'd like to - he's the best Daddy ever and will not let me, my big sister and Mommy go through this alone everyday!

I really want to help them help our family.  My Mommies friend told me about gofundme.com and I think it's a great idea.  It would be a great gift to take away some of Mommy & Daddy's stress. 

I know I still have a long road ahead of me, but I know I will make it because I have parents who put me first and fight for me everyday! They believe in me & pray with me for all my needs.  Throughout my young life, I've always seen Mommy encouraging other mommies here even though they are probably sometimes overwhelmed by what it takes to enjoy my uniqueness! 

These are some of my unique traits:

- Chronic Heart Disease
- Tetrology of Fallot
- Double Outlet Right Ventricle
- Possible Global Delays
- Possible Sight Issues
- Enlarged Liver
- Cysts on my right Kidney
- Clubbed fingers and toes
- Cleft Pallet and airway issues
- P.R. Roban (my jaw is very small and under developed
- Fragile bones
- Lung issues
- Left Diaphragm Paralysis
- Along with other unique traits
- and of course, im Super Girl! 

My Mommy always says there is always someone else whose struggle is greater than ours and needs more help than we do, so she has a lot of faith - she is very selfless!  And I think Daddy really believes he's a superhero because he never asks anyone for help, but between me and you..((whisper))...he's human!  I want to be the daughter who shows Mommy and Daddy it's ok to be the one who needs a little help too sometimes - because right now, I just need a little help so they can catch up on and keep going with the ever-growing expenses.  My Gramma's and I promise we will always continue to pay it forward. 

Thank you for reading my story and for helping anyway you can.  Prayers for me and my family are also appreciated! We know just how much prayer works! My mommy says its my best medicine.

My Mommy set up an instagram account  where she updates all our friends and family on my progress. Feel free to follow along at www.instagram.com/nataliamacintyre    

For those who would feel more comfortable donating via Email Money Transfer, donations can be sent to Natalia's email address: [email redacted] With the password set as: ForEve

Also Don't forget it's Stollery Week June 8th-12th, 2015
 
*and there are many friends staying here with me who also need a helping hand :)

Love:

Eve Nahanni, Eden, Natalia MacIntyre & Gramma's <3