Graceful Heart

A mother’s worst fear is not knowing how to help their child or at least that was mine. It was not knowing if I made the right decision.

It started when she was a child. Gracie Jo. She was born with a rare disease called Shwachman Diamond Syndrome! A rare blood disorder. She was in and out of the hospital. Fever after fever. Rash after rash on her face. White blood count so low that monthly she would go right back to the hospital. Double ear infections, upper respiratory infections, oxygen dropped, growth was below normal levels, greasy stools, and pancreatic insufficiency.

She has always been so bright, full of life and just as cute as can be.

The first year that it got really tough, I had been working overtime to maintain bills. We had been from place to place to live. She had been with fevers every month. The hospital would send us back home and it would happen again until one day she woke up with a mass on her neck. I rushed her into another hospital because no one would listen to me at the other hospital. Gracie was 8 at the time. She was lathargic.

Bloody noses that wouldn’t stop, ear infections that burst, and high fevers are just a few things that she experienced. That hospital rushed her to a more child equipped hospital where they examined her mass. It turned out that her body was unable to fight infection so the infection stored in the pockets of her lymph nodes where they had to drain it. After draining it and people being around her, it grew back and that’s where we decided she needs to be isolated.

In case you didn’t know, absolute neutrophil counts (anc) are what helps fight infection. Normal anc Levels are 1500 at the low end of it. Gracie ran about between 150 to 500 which is severe neutropenic. So at the time of her first real hospitalization, all her cells including platelets and red cells were low. She couldn’t even talk.

As she got older, around the age of 9, she was diagnosed by Children’s Hospital with Shwachman Diamond Syndrome!

Her life revolves around testing and doctor appointments. She works with 3 main doctors: GI (for pancreas), Hematologists (For blood), and Pulmonary (for lungs). The rest of the specialists are in and out including the pancreas specialist.

She has routine follow-ups every 3 months for complete blood count to check for leukemia because unfortunately this disease goes hand in hand with cancer. There’s a higher chance of getting a blood cancer. Every time she has a fever of 100.3 or more she gets rushed to the hospital to see if she has to stay for isolation or if she can go home to get better because her body has a hard time on its own to fight.

She’s missed camps for isolation and she has missed fun dances.

I do have to say that she is my true hero! Even when she is battling fevers in isolation at the blood/cancer unit, she thinks about all those wonderful kids battling cancer in the rooms next to her. She gives if she can, she writes letters to them when she’s there. It’s been such a blessing to have come to see how big her heart is! When she first got isolated she decided to name herself Heart!

There are so many adult and kids fighting rare diseases. I want to take a moment to tell you something about this disease. There are kids right now waiting on a bone marrow transplant and can’t find a match because of ethnicity and the need for 100 percent match. It’s easy these days to give bone marrow. If there is anyway to save a child’s life, wouldn’t you? Please go to bethematch.org! Be a hero to these wonderful heroes fighting every day!

If you’re a parent struggling with a sick child, I want to say, please educate yourself on their symptoms. Be the advocate. They thought I was crazy but I was just a desperate mom looking for answers and not stopping until I found it. I am very lucky and grateful to have gotten the doctors who knew about her disease and now by being proactive with the medications she needed, we can manage a lot better.

Don’t give up hope! Find the answer and help find a cure!