Eight-year-old Grant Rechen has defied the odds his entire life.
The Luling child was diagnosed with the rare illness “Vein of Galen Malformation” when he was just three months old. The disease is a large mass in the brain that steals blood from the body to feed itself and continues to grow.
Most afflicted children don’t live long enough to even receive that diagnosis, dying of heart failure due to a hole that forms in the heart because of the disease.
“We found it because his head was very large,” said Paula Rechen, Grant’s mother. “They did discover a hole in his heart, but it wasn’t big.”
Since that time, Grant has gone through 16 surgeries and a number of complications. His condition caused his jugular veins to collapse. He suffered a small stroke before one surgery.
But nothing has floored Grant, who faces a pivotal surgery nine months from now. He underwent a procedure in June that could not be completed due to complications — the surgeon was not able to safely operate past a vein without risking the potential of another stroke.
Next spring, another attempt will be made; if successful, the illness may be killed for good. If it isn’t, it will stand as the last surgical attempt to eliminate the disease, giving way to radiation treatment.
That Grant has come so far is a credit to his attitude, the support of his family and friends and, his mother says, some fine work from Dr. Alejandro Berenstein in New York City, the pioneer of the neurosurgery Grant now receives.
Originally, the family had to find medical care within Louisiana due to their insurance requirements under Medicaid. But when things took a turn for the worse, they received permission to find help out of state. That brought them to Berenstein.
“The care we received here honestly caused more problems,” Paula said. “Grant was having stroke symptoms and was getting severe headaches every day. He had to check into the hospital every week. He was in the dying process.”
Grant received six surgeries in Louisiana before finding Berenstein’s care.
Things began to improve.
At first, he made trips to New York for treatment every four weeks. Then it became six weeks, then every eight weeks, then 12.
Now, the visits are spaced out every six months.
“(Berenstein) and his team have been amazing,” Paula said. Through it all, Grant’s attitude has been nothing short of extraordinary.
Paula said by the age of five, his personality began to truly flourish as he exhibited a silly and very affectionate side. She said he’s extremely caring for his six siblings, and that despite his trials and tribulations, he’s always got a big smile on his face.
“He’s very bright,” she said. “We were told he’d be of average intelligence if we were lucky. If you tell him anything, he remembers it and details. He deals with anxiety, but he doesn’t let it keep him from enjoying anything.”
Though limited by shortcomings due to the illness, he plays sports and stays active.
Paula also said he has been something of an inspiration to others. Grant often references his faith in God, and both he and his family believe prayer has gone a long way toward his healing.
“Every night, he prays for the health of his friend, Alex Oxford (a Luling child battling Adrenoleukodystrophy) and his own,” Paula said. “He’ll tell you that it’s Jesus who’s healed him. People have come up to us and said that Grant has caused their faith to grow.”
Likewise, Paula has found faith in her surrounding community.
Many have stepped up to help the family’s cause both financially through fundraisers and emotionally.“Our parish and community are absolutely amazing,” she said. “We could never leave this community. The people here saw we needed help and it’s been incredible how many people have helped us.”
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