Baby boy fights illness
BY KIMBERLY POWELL
Wednesday May 30, 2007
Lakeshore Advance staff
For the family of thirteen-month-old André Jeffrey, life is surreal. “Andre has made it through some really rough times,” says his mother, Sheila. “It’s unbelievable he made it though the times when I never thought he would.”
André was born to Sheila and Dennis a perfectly healthy baby until he was diagnosed with Omenn’s Syndrome (OS), a rare form of SCID (Severe Combined Immunodeficiency Disease) at two-months-old. André is one in three children with OS at The Hospital for Sick Children in Toronto.
OS is usually presented within the first three months of life. Infants with this disease are frequently sick and become ill with bacteria and viruses that unaffected babies easily fight before showing symptoms. For a child to develop this condition, he or she must inherit a copy of the same inactivated gene from each parent; who are usually unaffected because they only one copy of the inactivated gene and are considered “carriers”. When two “carriers” have children, there is a 25 per cent chance for the child to be affected.
Sheila and Dennis live as “single parents” under the circumstance. Dennis at home, North of Grand Bend, with their children Donavon, 7 and Monica, 5 and Sheila at The Ronald McDonald House in Toronto spending 12 to 13 hours a day in a gown, hat, mask, shoes and gloves in isolation with André at the hospital.
Dennis says it really takes a toll on his wife to be there alone. He drives to Toronto every weekend to be with his wife and youngest son. The other children go for a week once a month. They can attend school at The Ronald McDonald House but not visit their brother as children tend to more commonly carry viruses which puts their brother at risk. They haven’t seen him since he was admitted in August of last year. Dennis says it will be like having a brand new brother when André comes home.
André showed symptoms of a skin rash, high liver enzymes and swollen lymph nodes. A bone marrow transplant replaced the ineffective immune system. Until and following the transplant, diagnosed children are placed on a regimen of daily antibiotics to hopefully prevent life-threatening infections. With this success, patients can expect to lead normal, healthy lives.
It wasn’t the bone marrow transplant but the chemotherapy and other drugs that did damage to André’s lungs and kidneys when the family was told they would lose André at Christmastime, says Dennis. “The doctors were amazed he started coming around again.” Every time they get their hopes up they fall back and have more problems. Sheila says her son’s case has been such a long process. “There have been so many downfalls,” she adds.
Two months after André was in the hospital, the family was able to get a room at The Ronald McDonald House. “I don’t know what I would be doing without the help,” says Dennis. All the churches in the Zurich community donated money so the family could afford the cost of being in both places. The family can’t believe how the community has pulled together. Sheila says they are all praying for them and she thanks everyone from the bottom of her heart. Because there is no funding for immunology, Dennis will start fundraising so they can save the next family from having such a hard time.
The hospital always has something to lift your spirits. “The one thing I don’t like about the hospital is the lump I feel in my throat when I go there,” says Dennis. “I feel not only for my kid but every kid. I’m a part of everyone there.”
A seven-year-old boy being treated with chemotherapy was losing his hair. An incident with the boy losing his hat and causing him embarrassment inspired Dennis to shave his head to lift his spirits. He says 12 children the family became attached too have lost their lives. “It has come to the point where I don’t want to know anyone.”
Once discharged from the hospital in three to four months, André will move into the apartment on the isolated floor in The Ronald McDonald House with his mother until he completes his four visits per week for a month or two. His father is in the midst of preparing André’s fully-isolated bedroom where he will have to remain for another six months. Sheila says they have to take it day by day because it can change so fast.
The Jeffrey and Denomme family is hosting a benefit dance featuring Joe Overholt and The Standbys for André and his family on June 8 at the Bluewater Community Centre. The $10 tickets can purchased at St. Joseph’s Country Store, Thiel’s Mercantile, Zurich Variety or from any Jeffrey or Denomme family member.
Leslie Jeffrey, André’s aunt, says everyone is working together and getting it done. She says “Andre is a little fighter and we hope he continues to fight and come home.” Both sides of the family have said they will do whatever needs to be done.
“The people of Zurich and area have been absolutely, spectacularly, wonderful,” Leslie adds. So far, not a single solitary cent has come out of the family’s pockets for the benefit dance. “It’s heart-wrenching to see them go through this.”
Dennis says they were told in the beginning that this experience will either pull the family apart or bring them closer together. “It pulled us closer together,” he says.
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