For more than a year a young Aldergrove family struggled to find an effective treatment for the persistent health problems dogging Carter Mantta.
Two-year-old Carter appears perfectly normal when you first meet the chubby and happy little boy. However, he’s had frequent bouts of pneumonia and other infections that have baffled medical and health professionals — until this past January when specialists at B.C. Children’s Hospital finally arrived at the right diagnosis.
Carter has a very rare genetic disorder named chronic granulomatous disease — also known by its acronym, CGD — in which immune system cells called phagocytes do not function properly.
Certain immune system cells in Carter’s body are unable to kill some types of bacteria and fungi and the disorder leads to long term and recurrent infections. And while long-term antibiotic treatments may help to reduce infections, early death is typically a result of repeated lung infections.
Carter’s parents, Nathalie and Carl, and his four-year-old brother Brayden, have been trying everything they could think of to help him “just be a normal little boy again,” says Nathalie.
“When Carter was three months old we made our first doctor’s visit. They thought his bronchitis may have been caused by a virus or allergies,” said Nathalie.
“We spent money on a naturopath, and tried putting him on a dairy-free diet and getting rid of all our carpets in case it was allergies. We made many more doctor visits, testing for strep or staph infections, viruses. Tests for cystic fibrosis and celiac disease came back negative.”
Carter had two bad bouts of pneumonia in August and January, when the CGD diagnosis was made.
Nathalie says that, in layman’s language, CGD means that Carter’s white blood cells are unable to perform the “bleaching” process to kill bacterial infections.
“His red blood cells and platelets are fine, but his white blood cells have only 0.04% capacity, compared to the 100% capacity of most people,” said Nathalie.
For this reason Carter is on prophylactic antibiotics, while the family awaits stem cell transplant surgery scheduled for May at Children’s Hospital.
This is a relatively new and promising procedure for CGD, but it comes with no guarantee of success.
“It all depends on the body,” says Nathalie. “There is a chance of rejection and infections. The chemo and radiation could trigger other factors.
“There is a very high risk, but without the transplant the doctor said he might live to 19; he can’t say for sure.”
When Carter enters hospital in May for the transplant he will have to stay for another three to four months, and it will take a year or so for a full recovery.
Carter’s medical care is covered by the B.C. Medical Plan, and since the diagnosis was made his antibiotics prescription has also been covered, to the tune of $178 every two weeks.
This is a huge relief to the family, as Nathalie has been unable to work since Carter was born. She has stayed at home for the past year or so in order not to introduce any pathogens that could make him sick. The family relies on Carl as the sole breadwinner in his work as an electrician.
However, after paying the mortgage on their modest home, along with other normal household bills, there is not a lot of money left over for other looming expenses.
“I can stay at Ronald McDonald House for $25 a day while Carter’s at Children’s and that’s very cheap, but after three months it adds up. Even the gas to go into Vancouver every day is a lot of money,” says Nathalie.
“And on one income we can’t afford daycare or a nanny for Brayden while I’m away and Carl’s at work. And we can’t afford to relocate into Vancouver either. I just don’t know what to do.”
Nathalie has talked to a social worker at the hospital, who told her that other than saving their receipts for next year’s tax return, there are not a lot of options.
Friends and supporters in the community have offered some help, but unfortunately their extended family is either too far away or too elderly to help provide care for Brayden.
“Carl is feeling all the stress. He feels bad because he can’t take the time off,” says Nathalie.
Carter is the first CGD diagnosis in B.C. in 20 years — there are only a handful across the continent each year — and Nathalie has spoken to the B.C. mother of the two men who were born with CGD over 30 years ago. One of her sons has passed away but the other is now 35 years old and leads a fairly normal life.
For his part, Carl puts on a brave face and says “the worst part is over” now that they know what the problem is and he’s confident Carter will come through with flying colours.
Nathalie and her family are appealing to local service groups, individuals and politicians, in the hope that the community will find it in their hearts to help find solutions to this family’s situation.
Aldergrove Save-on Foods will be raising funds for Children’s Hospital and the Mantta family at the store’s annual charity garage sale, set for Saturday, April 30 from 8 a.m. to 3 p.m. Store management has pledged the first $3,000 of funds raised to Children’s Hospital, with all funds over and above that amount to go to the Mantta family. The store will be accepting donations to the garage sale (no large furniture or appliances, please) up until April 28; call Jim, Laura or Mike at 604-607-6555.
In addition a special account has been set up at the Royal Bank in Aldergrove and donors may deposit to “transit #00160, account #5029954” to help the family.