American Heart Walk : Ellie’s Story


Ellie Jo.
Ellie happens to be my husband’s cousin.
She also happens to only be [almost] 4.
That makes her one of Henry’s best friends. 
Keep reading to learn a little about Ellie’s life.
[Inserted throughout are quotes from Ellie's Mom, Heidi.]

Ellie Jo.
Every year, the Heart Walk for the AHA lands right around Ellie’s birthday.
Every year, Ellie’s family and friends get together for the walk, and then celebrate her birthday.
This year, we’ll be celebrating her 4th birthday.
And I’m so excited to be able to walk this year. [No wedding cakes to be delivered!]
I’m also excited to step in on my mother-in-law’s behalf to raise some awareness.

Ellie Jo.
Born with a congenital heart defect [CHD].
More specifically, hypoplastic left heart syndrome [HLHS].
Having open heart surgery at five days old.
Five months later, another open heart surgery.
Just this past April, when she’s nearing her 4th birthday, another open heart surgery.
The hope was for this to be the last.
It’s not.
She’s now waiting to put in a pacemaker.

“We were so excited for our routine ultrasound at twenty weeks gestation. It was then that we discovered our first child, a daughter, was diagnosed with a life threatening heart condition. The most exciting day of our lives as new parents turned into one of the scariest, most confusing days of our lives. Ellie was diagnosed with HLHS and severe aortic stenosis. Born at UIHC on August 8, 2007 Ellie underwent her first open heart surgery, the Norwood, at five days old. She was hospitalized for 31 days and went home with eight medications & an NG tube. At exactly 5 months old Ellie had her second open-heart surgery, the Glen, and was hospitalized 21 days with Chylothorox. With over a year of therapy she learned to drink her bottle, crawl and walk. This April Ellie had her third open heart surgery, the Fontan procedure. This was the completion of her pallation and three staged surgery process. Her heart will never be fixed but now the blood will flow more easily to the lungs with her single ventricle use. The Fontan was a very rough and long surgery for Ellie; we came very close to losing her. Each surgery is difficult but the older your child is the more you know them and love them. After prayers from nearly half of the country and around the world Ellie was guided through her recovery. She was hospitalized for 36 days this spring. We are now 9 weeks post-op and she is really starting to become her cute, sassy old self! Her voice is back, she is walking well, and has even started to do stairs again.” – Heidi 

Ellie Jo.

Enjoying arts and crafts with her mom.
Her favorite color is purple.
She’s a girly girl.
A wonderful friend to Henry.
As well as a wonderful big sister to Katelyn.
Ellie Jo.
Twenty years ago, her life journey would be very different than it is today.
Due to research and funding, Ellie has led a pretty normal life.
Due to research and funding, Ellie has recovered from three open heart surgeries.
This research and funding has provided improvements in her surgeries.
Imagine what another twenty years will bring for Ellie.
Ellie Jo.
One day, Ellie will need a heart transplant.
Hopefully that day is way later, rather than sooner.
With research, we can hope that day can be put off longer.
The longer the wait, the more research that can be done.
More research means more improvements in her treatment.
Walk your local American Heart Walk to help raise awareness.

“To look at her you would never know she has had six cardiac catheter procedures on top of her three open-heart surgeries. Doctors tell us she will need a heart transplant someday. When? Nobody knows the answer to that. It could be next year or in twenty years. Right now we will continue to laugh, play and count our many blessings each day. Ellie is truly a miracle.” — Heidi

My personal goal is to help Ellie’s Entourage team raise $1000 for the American Heart Association.
Click below to make a donation to help Ellie.
Any little bit helps.
One dollar or five dollars.
In addition to your contributions, please leave comments below.
With each comment I receive before the Heart Walk,
I’ll put in an additional donation of $1.
If you’re in the Cedar Rapids, Iowa area, come to the walk on August 6.
Please help spread CHD awareness and share this with your friends.
jamie @ hands on : as we grow
Henry is 3 years old.
George is 9 months old.

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  1. RedTedArt says

    Oh my Jamie, I wasn't really sitting down at the PC for a cry.. but my, your words have made me my eyes water! Good luck with the walk the fundraising and more importantly Ellie's ongoing treatment!

    Big hug to you all.


  2. Brooke @ Let Kids Create says

    What a little survivor! I can't imagine having to have my child go through 3 open heart surgeries. My oldest went through one open heart surgery when she was 5 months old and she is now 7. We really lucked out.

  3. Stephanie says

    Stories like this always make me stop and think about how lucky I am to be healthy and to have a healthy family. It's something we take for granted. Good luck to Ellie and her strong family!

  4. Making Mumma says

    Big hugs to you all especially brave Ellie. One of my twins had heart surgery at 9 weeks and it was a terrifying experience. She has now been given the all clear. CHD touches so many lives! xxx

  5. Messy Kids says

    Just beautiful Jamie. My heart goes out to Ellie Joe and her family. I wish I had the means to donate but instead, I leave this comment and will pass her story along to my FB friends, Messy Kids FB friends, and my readers. I wish I could give that dear, brave girl a hug. Instead I send her prayers.

  6. Marilyn623 says

    My daughter was also born with multiple heart defects… Underdeveloped chamber. Stenotic pulmonary valve. Atrial septal defect… I am glad to say that amazing doctors have put her together in good working order, and this was back in 1982!! She is now 29 years old, married, and a graduate student. Modern medicine is amazing and I am grateful every day for the miracle of Kristen. Blessings to Ellie…

  7. Anonymous says

    Wow, thank you for your heart to help this little girl and family member. This is dear to my heart. My son received a liver transplant 4 1/2 years ago. I can relate to surgeries and horrible news at 20 weeks gestation. My prayers will be with her and her and your families.

  8. Sherry and Donna says

    We've shared this on our Fb page and wish you and your extended family nothing but good things Jamie!
    Donna :) :)

  9. Laura says

    Will definitely share this! Ellie is such an inspiration at only (almost) 4 years old. Love her SO much!

  10. Isa says

    Bless her. She looks amazing!
    I'm only not doing the walk because I live on the other side of the Atlantic…
    Wish her all the best luck.

  11. Alissa says

    One of my dear girlfriends has a one year old with CHD. She also has endured multiple open heart surgeries. I totally can see your point about more time equals more research. It is amazing what technology can do for these kids right now (this little one I'm talking about is alive today because of the ECMO machine that pumped her blood and gave her oxygen for three days.) I hope Ellie gets a lot more time before she must have a transplant

  12. Rachel@I Heart Crafty Things says

    My thoughts and prayers are with Ellie Jo and her/your family! Wish I lived close to participate in the walk…Such a great cause!

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