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Wish Blog

Aug 15, 2016

LaGrange is for Wishes. Are you?

Edwina is one of the wish children from LaGrange, Ga. Here's her story, as told by Edwina's mom.

Meet Edwina

Until she became ill, Edwina was very active in extracurricular activities, including soccer and dance. When we moved to LaGrange in December of 2011, she put soccer on hiatus for a couple of seasons to explore dance. Little did we know, but Eddy would not return to the sport she had played for so many years.

In the early morning hours of October 30, 2012 Eddy woke up vomiting. Since she was always healthy, I assumed she had a bug of some sort. But something in my spirit told me to call the nurse line for our insurance company, which I had never before done. The nurse felt it was probably a bug, too, but recommended I contact our family physician just to let them know what was going on. 

I spoke with the nurse from our family doctor's office, who told me to check Eddy's temperature. She had a fever. After giving her Tylenol, the fever hadn't began to break in an hour. I took her into the doctor's office. We were at the clinic from 10 am until after 6 pm. 

We found out it wasn't a bug. Eddy was experiencing excruciating abdominal pain and we found out her white blood cell counts were well under half of where they should be.  

Our doctor immediately contacted Children's Healthcare of Atlanta. We left with instructions to keep Eddy out of school until we went to the hospital and returned to the clinic the following day to repeat the tests. The following day the picture was worse; her red blood cells and platelets had dropped as well.

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The Diagnosis

Fast forward a few months after MRIs, CT scans countless blood draws a trip for a second opinion to MCG in Augusta and two bone marrow biopsies, we were given a diagnosis of PNH (proximal nocturnal hemoglobinuria) and Aplastic Anemia. As a mother, I couldn't believe we were going through this. There were and are no immediate answers. 

Aplastic Anemia is considered a rare bone marrow failure disease, but PNH is an extremely rare bone marrow failure, affecting only 1 people per million. PNH is caused by a mutation of the PIG-A gene and causes red blood cells to break apart, can cause blood clots, impairs bone marrow function. As if having Aplastic Anemia and PNH is not enough, the conditions have the ability to progress to MDS and leukemia.

Eddy has had multiple bone marrow biopsies, surgery to have a port placed and removed and underwent treatment with the only FDA approved drug for PNH. She will most likely be back on treatment at some point, because there is no cure for PNH. She lives with abdominal pain, migraine headaches, excessive fatigue and weakness. She is sometimes out of school for a week at a time. 

Despite everything, Edwina has maintained above a 4.0 GPA. She is currently a senior at Troup High School, participating in multiple clubs and active in ROTC and Color Guard. She loves life and loves to learn.

A Wish Come True

Having her wish granted through Make-A-Wish Georgia had a tremendous impact on Eddy. Her wish was to meet a band called IM5, and it came at the perfect time. Eddy was going through one of the worst patches she's had during her illness. She'd begun having esophageal spams and missing quite a bit of school due to fatigue and pain. She knew Make-A-Wish Georgia was working on her wish, but had no idea when it would happen. 

I received a call from our wish granter a couple of weeks before the wish was to happen. We had to hurry to get her wish party set up. A wish party is when it is revealed to the child that their wish is being granted. Eddy was so shocked, she thought she was going to lunch to celebrate the achievement of one of her friends. 

The week leading up to her wish was the happiest and most energetic I'd seen my child in well over a year!

Please understand, Make-A-Wish Georgia doesn't just coordinate a wish. They pay for everything and they make sure you are taken care of from start to finish. We had volunteers to meet us at the airport and assist with our needs there including help with lost luggage. 

They realize that the families dealing with a child with life threatening medical conditions usually don't have the funds to contribute to a wish.

An Experience to Remember

We were flown to Florida and back, given a rental car, put up on the Universal resort, given Disney passes (which as a Wish family we were given priority in the ride lines) and money to eat for the duration of the trip. This was all in addition to Eddy meeting IM5.

The wish itself was amazing. 

Eddy got to meet the band she loved and they were so kind and gracious. They were flattered that out of everything she could have picked, Eddy chose to see them as her wish. The private meet and greet extended into the public meet and greet. Eddy hung out with the band until it was time for them to prepare to get on stage for the concert.  

The band signed multiple items for her and gave her one of each t-shirt they had available. They allowed her to listen to some of their unreleased music and asked her feedback.

To top the night off, the band brought Eddy on stage during the performance and posted a picture with her on their Twitter page twice! 

The Impact of a Wish

What Make-A-Wish Georgia gave my child, I would never have been able to provide on my own. We are just a regular family and don't have the connections to make things like this happen. Edwina's wish made such a difference in her life, she has those memories to hold on to forever and gave her the strength to keep fighting. 

When times get tough for her, she can pull out the pictures and mementos and she finds the will to fight again. 

No family is prepared when tragedy strikes. And I would NEVER wish upon anyone what I have to live with. Our life is a daily "what if," worrying every time she sleeps past noon, starts running a fever, has a cough or starts bruising for no reason. 

I can never repay Make-A-Wish Georgia for what they brought to Eddy's life, but I'll spend the rest of my life doing any and everything I can to help the organization. And unfortunately, sometimes children pass on before their Wish can be granted. 

Please help us reach our goal to provide wishes for the children in our community that are still waiting for their wish. Because wishes can't wait!

About this Blog

At Make-A-Wish Georgia, stories are one of our most powerful resources. The Wish Blog is a platform we use to share just a few of these stories.

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