Connor

Connor and his miracle

Family reunions are full of excitement, especially when you're 8 years old and close to 50 relatives gather to pray for your healing. Small-town-Ohio boy Connor was born with a rare condition known as HHUGS, a sweet-sounding acronym short for a sinister ailment involving brain tumors and the seizures they cause. Connor's condition was the catalyst for people from two continents to converge on the Phoenix area in February in an effort to heal him and put an end to years of suffering. Their faith in God and hope for healing led the way.

His parents remember Connor as an unusually happy baby.

"He used to laugh when we fed him and we'd laugh right along with him," says Bob, Connor's father. What he and his wife Kathleen did not know was that Connor suffered from what is commonly referred to as "laughing" seizures. By 2 years of age, however, Connor's seizures had become more serious. "He turned blue and his body was rigid," Bob explained. "It was awful to watch."

HHUGS diagnosed

Tests revealed a mass at the base of the brain and led to Connor's diagnosis of HHUGS. While the brain tumors were benign, they are still quite serious. In older children the seizures become more severe, resulting in brain damage and bouts of extreme rage. Connor suffered some 80 seizures a day, in spite of the myriad medications prescribed. "It was like he was sedated or drunk all the time," Kathleen said of the drugs' effects. "Plus, he had a horrible reaction to Depakote and nearly died."

Then there were the terrible tantrums to be endured. "We left many a restaurant and store when he flew into a rage, " Bob said.
Thanks to her internet savvy, Kathleen found Dr. Jeffrey Rosenfeld, an Australian who had developed a novel technique for removing the tumors which cause HHUGS. Dr. Rosenfeld arranged for a week-long visit to the highly acclaimed Barrow Neurological Institute (BNI), part of St. Joseph's Hospital and Medical Center in Phoenix. There he planned to train two other neurosurgeons in the new technique while performing operations on six children with HHUGS.

On Tuesday, Feb. 18, Connor became the second person in the United States to have the groundbreaking surgery. When Dr. Rosenfeld emerged from the operating room three hours later he told Kathleen and Bob that the surgery had been a success. All of the tumors had been removed, something the traditional surgery would not have been able to accomplish.

Seizure-free

A visit to the BNI just days after surgery found Connor's family pleased and grateful that the operation had gone so well. "He hasn't had any seizures since they removed the tumor," Kathleen beamed.

In the four months since his surgery Connor has remained seizure-free and the family knows their prayers were answered.
Strong Catholic parents and relatives, a holy priest, and a well-respected Catholic hospital worked together to restore a family and bring hope and healing to many others.

Now that's a happy ending of which we can be proud, fellow Catholics.

UPDATE

Today it has been 2 years since Connor's surgery at the Barrow Neurological Institute, which at that time Connor was not able to read.

I am happy to report that he is now reading, and has recently passed his third grade reading comprehension test with a "C'' ! :) He is also doing basic math, which he wasn't doing before!!

He is still in Special Ed, but has made the honor roll! He is still developmentally delayed, but has made so much progress in the past two years and hasn't had any seizures since right before surgery. He continues on Gabitril 4 mg. three times/day since the doctor here is very conservative. He is also on Luvox but this is temporary according to his Pediatrician. He was started on it since he was having a lot of crying (for no reason) when school began. We were worried that he had precocious puberty in October but his bone age x-rays and blood tests were all within normal range and returns to the endocrinologist again in March.

We are so thrilled that he is making so much progress!