
DATE: Thursday, June 12, 1997               TAG: 9706110180

SECTION: NORFOLK COMPASS         PAGE: 06   EDITION: FINAL 

TYPE: COVER STORY 

SOURCE: BY JOAN C. STANUS, STAFF WRITER 

                                            LENGTH:  150 lines

KEEPING CORY ALIVE AN EXPENSIVE ``EXPERIMENTAL MEDICINE'' - AND A MOTHER'S LOVE - ENABLE A 5-YEAR-OLD WITH A RARE GENETIC DISORDER TO SURVIVE.

JEANETTE BLOOMFIELD doesn't care what the U.S. Food and Drug Administration says. She doesn't care what the medical establishment tells her.

As a mother, she can see with her own eyes the difference the drug sabril has made in the life of her 5-year-old son, Cory, who suffers with a rare genetic disorder called ``tuberous sclerosis.''

And she is determined to do whatever it takes - or costs - to make sure he gets it.

``He used to just sit in the middle of the floor and drool,'' recalled Bloomfield as she watched her 96-pound son bound across her Norfolk living room, dragging an oxygen line behind him. ``Now he loves to feel the wind . . feed himself. He's even starting to communicate with me. He's actually got a voice now that he didn't have before.''

And most importantly, Cory's near-constant epileptic seizures, which have plagued the child since birth, have dramatically decreased, she said.

``Where he used to have 20 to 60 seizures a day, now that he's on sabril he's dropped to one or two every few days,'' Bloomfield said. ``To me, that's a miracle.''

But the ``miracle'' comes at a high price for the single mother of three who devotes herself full-time to the care of her homebound, disabled son. Because the FDA has not yet approved the seizure medication, it is considered ``experimental'' by insurance carriers and, therefore, not a covered medical expense. Consequently, Bloomfield must foot the bill for the medication herself, plus cover the cost of overseas shipping and handling fees. She orders sabril from England.

The cost for 100 tablets, which lasts Cory about two weeks, is close to $150.

``For his age and weight, the doctors say he should have eight or nine pills a day, but I can't afford that,'' she said. ``I can't even afford the five or six a day he's taking now.''

Desperate to save her child from the devastating seizures, Bloomfield began ordering sabril last August ``for her personal use,'' after hearing about the drug from another mother whose child also suffers with tuberous sclerosis. Cory has taken it, under a local doctor's supervision, ever since.

Although there are some side effects, Bloomfield contends her son has experienced none. The positive effects, however, have been startling, she said.

``It has literally changed his life,'' she maintained. ``We tried one medication after another to control his seizures and nothing worked. This does.''

Bloomfield tried to get Cory included in medical studies at clinics in the United States that are testing the drug. She was told he didn't fit into their guidelines.

``They say because his IQ is O, he can't tell them what the medicine is doing to him,'' she said. ``That makes no sense to me. You can see the difference it's made.''

A relatively normal child at birth, Cory learned to sit up, drink from his bottle and crawl by the time he was 9 months old. But then, a few months before his first birthday, the seizures began at such a fierce pace, Bloomfield feared for her young son's life. As part of the inherited disorder, noncancerous tumors had begun developing on Cory's brain, lungs, kidney and heart, causing breathing problems, heart murmurs and grand mal seizures. He also began to suffer from an acne-like skin condition.

Eventually, the disorder will affect his eyesight.

Doctors told the mother there was no cure for the debilitating disorder. Even more devastating, they didn't expect Cory to survive for long. What time he did have left, they told Bloomfield, the child would probably be in a``vegetable-like state.''

Despite the devastating odds against him, however, Cory has endured countless seizures during the last five years. Before taking sabril, doctors tried medication after medication to control his seizures, but nothing worked.

``This is a very strong-willed baby,'' Bloomfield said. ``He keeps coming back. He's had to learn to walk again four different times after suffering grand mal seizures. And you won't find as loving a child as this one.''

Last November was a particularly low point for the family, when the doctors discovered a spot on Cory's kidney after he suffered another grand mal seizure. His breathing problems had become so severe, the child had to be put on a ventilator.

``I had the doctors tell me then it's time to end mine and his suffering,'' Bloomfield said, her eyes filling with tears. ``They told me he had no more than one or two years left. But how can you give up? To me, I don't believe it. Every year, they've told me he's only got a little time left. When God's ready for him, He'll take him.

``I can't stop his death. All I want to do is make his life a better quality, to get the best while he's here. I just want to make him happy.''

She believes the sabril has helped do that. Seven months after being removed from the ventilator, Cory has again learned to walk, feed himself and climb into his bed on his own. He spends his time playing with his favorite toy, a Playschool piano; feeding himself a favorite snack or snuggling in front of the television set with his Michael Jordan pillow. Bloomfield says he's also improved mentally.

``Instead of being at a 6-month-old level, now doctors figure he's at age 12 to 16 months,'' she said.

Financially, however, Bloomfield is at her wit's end.

Because Cory requires around-the-clock care, the 30-year-old woman was forced to give up her job as a companion to the elderly right after he was born. Now on public assistance, she gets $240 a month in food stamps and another $231 from Aid for Dependent Children. The father of her oldest child pays $200 in child support, and she gets $480 a month from Social Security for Cory because of his disability.

Her rent, utilities, food and medical expenses rarely stretch far enough.

Although Medicaid covers some of Cory's medical expenses and therapy, the insurance simply does not pay for all the extra equipment, diapers, medicine and other ``mounting'' necessities the child needs, Bloomfield contends. Because of lung damage and other health problems, Cory is attached to an oxygen line at all times, sleeps in a specialized hospital bed, is fed through a tube inserted in his stomach and has a cabinet-full of medication to consume daily.

The mother has received some help. The Shriners, Rehabilitation of Popular Halls, and Make A Wish Foundation have helped pay for a special bed, therapy, a television set and other necessities.

EDMARC children's hospice, based in Portsmouth, has secured some private donations, provided sibling counseling and been instrumental in finding other support services for the family.

But Bloomfield has had to cover the cost for the sabril largely by herself.

``I need help,'' the mother admitted. ``I'm to the point where I simply can't afford his medication. I've sold what I can and borrowed what I can. But the money just isn't there. If I can't find the money somehow, I'm going to have to move to a small, two-bedroom apartment in a worse neighborhood and give up this house we're renting. I don't know what else to do. That medicine is my hope.''

As she fondles the last of the packages of medicine, the mother maintains she is not about to give up.

``If he doesn't have that medicine, I know I'm going to lose him,'' she said, crying. ``It's hard to keep the faith sometime. I'm scared to death. But the endless joy I feel with him . . . that's what keeps me going. Cory is worth it. I'll find a way.'' ILLUSTRATION: Staff photos including color cover by NHAT MEYER

Jeanette Bloomfield plays ``row your boat'' with her disaabled son,

Cory. The single mother of three pays about $300 per month for

sei Jeanette Bloomfield holds her son, Cory, to help him relax enough to

take a nap. Cory suffers from tuberous sclerosis, a rare genetic

disorder that causes him to have seizures.

Oxygen helps Cory Bloomfield breathe. And the new sabril medication

has dramatically decreased the number of seizures.

Graphic

WANT TO HELP?

Donations to help pay for the medicine Cory Bloomfield needs may

be sent in care of EDMARC, P.O. Box 11355, Norfolk, Va. 23517.

Please specify that the gift is ``for the Cory Bloomfield account.''