Luling teen battles resurgence of rare illness

Grant Rechen enjoying one of his favorite pastimes, fishing.

After overcoming long odds to survive his battle with a rare condition, 14-year-old Grant Rechen was supposed to be through with all of the uncertainty, all of the anxiety.

But his fight is not over.

“Going into the unknown is scary,” said Paula Rechen, Grant’s mother. “It’s a huge spiritual journey to trust. We have to trust … we have to trust.”

At three months old, the Luling boy was diagnosed with Vein of Galen Malformation, a rare blood vessel abnormality inside the brain that causes arteries to connect directly with veins instead of capillaries, which slow blood flow. This causes a rush of high pressure blood into the veins. In effect, the mass steals blood flow from the body to feed itself, enabling its growth. Since his diagnosis, he’s undergone 16 surgeries and two small strokes.

Most significantly, he has also survived the collapse of both jugular veins. He is one of only two known cases in the world to survive bilateral collapsed jugular veins and Vein of Galen Malformation. Most children diagnosed with Vein of Galen Malformation don’t live long enough to even receive the diagnosis, as it causes a hole in the heart because of the disease. Grant made it through.

“That’s miraculous,” Paula said. “For him to be alive and functioning … it lets us remember that God just has a plan for him.”

Once again, he faces a life-saving surgery, though three years ago, the hope was this was behind him.

Three years ago, Grant and his family seemed to be almost out of options, however. His neurosurgeon, Dr. Alejandro Berenstein, had exhausted traditional methods of treatment and suggested an experimental radiation treatment that would hopefully allow Grant to put this behind him. It seemed to work: Grant’s condition improved significantly and he went into remission.

In December, though, Grant began to feel ill. Significant nausea persisted, necessitating a visit to the emergency room. Because of Grant’s prior condition, doctors called for an MRI to make sure there was no bleeding. When results came back, it revealed a mass in his brain once again.

“They said it was a progressive change,” Paula said. “It means we’ll have to go back to New York (for treatment) because nobody can treat it here. They’re not sure why the mass is growing again. There’s a lot we won’t know until he goes back and has the surgery … they’re looking for a new path in his brain to finally kill this thing off.”

Until then, Grant is still thriving, making straight A’s in his school work. He sings and plays music at St. Anthony of Padua Church, and – Luling through and through – loves to fish and be outdoors.  That church community is part of what Paula said has kept the family’s faith strong, as well as the support of family and the community.

For her, the strength she sees in her son is inspiring as well.

“It’s a constant level of anxiety. Grant does deal with that … he’s very strong in his faith and tries very hard to maintain a positive attitude about this. He has a big heart … he has a strong desire to live and beat this,” Paula said.

An unfortunate reality is that part of the blow is financial. Because the treatment must be done in New York, it is out of state and thus out of network for insurance, on top of travel. The Rechens set up a GoFundMe (titled Help Luling boy fight rare illness) to help offset those expenses, raising more than $7,000. Dat Dad’s Club of Luling has also stepped up to help – Grant was, in fact, the beneficiary of the group’s first ever fundraiser, and the Dat Dad’s team came together to cover $3,000 toward the cause.

“So many people we don’t even know have donated to help … we just have this amazing community out here. We just do. I can’t even begin to express my gratitude for this community,” Paula said.


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