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$5,360 of $50,000
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66 donations

This fundraiser ended on 09/30/12

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The Ella Grace Fund will help with travel, medical, and out of pocket expenses for her transfer to Children's Hospital of Philadelphia.

Ella Grace may be only 4-years old, but she can teach us all some valuable lessons:

Take one day at a time.

Smiling makes other people smile, too.

Don’t be angry.

Elmo is cool.

Always love unconditionally.

Fashion is everything.

Most importantly? Fight hard.

She knows all about fighting hard, because Ella Grace is in a serious fight for her life. At birth, Ella Grace was diagnosed with a rare genetic syndrome called Cornelia de Lange Syndrome, or CdLS. She shares many of the physical characteristics and pronounced developmental delays associated with the syndrome, but her related medical complications continue to increase in number, complexity and severity.

Ella is 100% tube fed due to serious complications with reflux and aspiration. She has had more surgeries than most people have in a lifetime. She is unable to walk or talk and has hearing loss in both ears. She has frequent bacterial infections associated with her trach, which she has had since she was 5 months old. She also suffers from frequent and very dangerous urinary tract infections with aggressive strains of bacteria that grow stronger and more resistant every day. As these frequent infections strengthen, her doctors are forced to choose stronger antibiotics. These “bugs” are becoming “super bugs,” and the stronger they get, the fewer choices they have to treat them. It’s a vicious cycle.

Most of her doctors are unwilling to move forward with procedures that could help fix some of these problems because they are incredibly risky and will very likely start a dangerous chain of events causing even more complications. It’s a choice of rotten apples, because doing nothing could be just as risky.

Because they feel that they have exhausted all their efforts at their current hospital in Atlanta, they have been given approval to transfer Ella to one of the best known children’s hospitals in the country, one that has doctors that specialize in CdLS and can possibly offer a new set of options and a fresh look at her situation.

Ella Grace is a very lucky little girl to have parents like Suzanne and John. They are dedicated to the health of this beautiful child and they will stop at nothing to find the best treatment for her. They don’t ask for anything but love and prayers. They certainly don't want you to feel sorry for them. On the rare days that she is healthy and feeling well (and not scheduled for doctors appointments, or various therapies) they make her days count. They take her to the beach and show her the sunset.They ride the carousel and visit the penguins at the aquarium.

Her sick days, however, seem to constantly outweigh her healthy ones. She has spent more than half of her days, often weeks at a time, in the hospital (or “Baby Jail,” as they like to call it). That’s over 50% of her life.

Suzanne quit her job and has become so knowledgeable on CdLS and Ella’s medical conditions, we wonder if she shouldn’t just slip on a white coat and skip med school altogether. With her constant research and hunger for answers she has already made a positive difference in Ella Grace’s life as well as the CdLS community, in which she is deeply involved. She writes brilliantly in a blog about her life with a medically fragile child, and serves as not only an inspiration to other parents, but an invaluable line of communication that is moving this complicated syndrome forward. She also writes articles for FOCUS, a newsletter for parents with children under stress, and helps to coordinate an annual CdLS benefit.

John is as strong as they come. He is Suzanne and Ella Grace’s rock. His job is in sales and you can’t be successful in sales if you are unable to be there to sell. He needs to be there for his daughter but how do you support a family if you can’t be at work? Somehow, he is holding his family together.

But all this strength and determination has a price. They are emotionally and physically exhausted. Overwhelmed. Feeling terrified of what’s next and the difficult decisions that await. They aren’t eating right or seeing enough sunshine or getting exercise like they should. And to add to all this, they have the worry of out of pocket expenses associated with the constant hospitalizations. They are facing continuing loss of income and growing debt. Ella’s 4 years of treatment has cost millions of dollars. Yes. Millions. They have health insurance, but the out of pocket expenses alone are staggering. Now they will be transferring to CHOP. It will only get worse.

Yes, their lives are unbelievably complicated, but it’s the simple things that keep them grounded. Without fail, Suzanne places a beautiful, brightly colored bow in Ella’s long brown hair every single day. A big girly one. Even when she is hooked up to IVs and breathing machines and trapped in a hospital bed wearing a boring hospital gown, that little girl gets her chance to shine and sparkle. Ella Grace is one tough cookie. The diva of all divas. She has the entire hospital staff firmly wrapped around her little finger.

Here's a quick little compilation of Ella's first 4 years.  (Complete with hair bows) 

http://www.youtube.com/watch?v=Ib-ek-RAnd4

The physical and emotional toll on Suzanne and John is undeniable. Ella Grace’s health, we have no control over. But what about their financial burden that grows by leaps and bound each day? What about the medical bills, out of pocket expenses, and now impending travel expenses?

We CAN help with that.

If we pull together we can ease their mind by helping them supplement some of their lost income and help with things like mortgage, cell phone, groceries, gas and daily living expenses. Give them some money to go out to dinner once in a while instead of eating hospital cafeteria food and junky snacks out of vending machines. And now, as they plan this trip to Philadelphia, their already outrageous expenses will only grow. If they can not get into the Ronald McDonald House as planned, they will need to find a place to stay in Philly and it will get expensive very quickly.

Help us by giving whatever you can, and take some of the burden off Suzanne and John so they can concentrate on getting Ella Grace better. And let’s get this beautiful little girl with the brilliant smile some more hair bows.

Your support will be appreciated so much. 

For more information on Cornelia de Lange Syndrome (CdLS), visit www.cdlsusa.org. 

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