Lougheed baby boy awaits transplant

Christmas for one Lougheed family will be quite different from what they expected.

Elizabeth and Ben Fehr had a son Apr. 17, who they named Willi. This will be Willi’s first Christmas, but he won’t be able to spend it at home.

Since birth, Willi has been plagued with severe ear infections, and didn’t seem to be fighting them off as well as he should. The Fehrs took him to the doctor, and Willi was referred to a specialist at the A.E. Cross Hospital in Edmonton.

Willi has been diagnosed with Severe Combined Immuno-deficiency, or SCID as it is commonly called.

There are many forms of SCID, the one Willi has attacks the X chromosome, and therefore affects only males, although females can carry the gene.

While many states and the province of Ontario do routine screenings for SCID at birth, Alberta does not.

Experts say if SCIDs is caught at birth, there is a 95 per cent chance treatment will be successful, that percentage goes down as the child ages.

SCID gained more widespread notoriety with the case of David Vetter, often called ‘the boy in the bubble.’ Vetter lived for 12 years in a bubble to avoid germs. Unfortunately for Vetter, the bone marrow match he needed did not materialize.

For Willi, however, the chances of finding a match are quite good, but the waiting period is typically around six or seven weeks. Willi’s treatment will involve a bone marrow donation.

His treatment team is currently looking for a match, normally they would turn to his siblings, but they are all too young to donate, ranging in age from 10 to just two-years-old.

For now, Willi has been moved to the Alberta Children’s Hospital in Calgary, where his mother Elizabeth will stay with him until his treatment is complete, and his father, Ben, will spend most of his time.

Ben has been forced to leave his farm labourer job, as Willi’s physicians insisted he and Elizabeth both stay with Willi in Calgary.

That means that during the waiting period, treatment, and recovery, the family will live on what Ben earns through Employment Insurance, which is typically only 60 per cent of the wage he was receiving.

While cancer patients have sources for financial aid for families dealing with this illness, SCID is relatively obscure, and there is no aid available to the family.

The Alberta Children’s Hospital has an emergency fund which the Fehrs have been able to access, however this is a one-time use program.

Holly Bovencamp, who works very closely with the Mennonite families in Lougheed says, “They don’t fall into any categories for traditional funding.”

Luckily, their normal expenses are quite low, their rent in Lougheed is quite reasonable, and includes utilities.

Elizabeth’s mother has come from Ontario to stay with their five older children while Willi receives treatment.

Bovencamp says that even staying at the Ronald McDonald House in Calgary will cost the family approximately $3,600 over the nine months Willi’s treatment and recovery is expected to take, assuming they can find a match within six or seven weeks, with another $1,000 for parking in Calgary.

She says at first the Fehr’s were sure that they could handle the financial burden of Willi’s treatment, but reluctantly agreed to make their plight public when the full extent of the costs they are facing became clear.

Bovencamp recently learned that Willi will be discharged to the Ronald McDonald House until his physicians can find a match, where he will have to have a special diet during his entire treatment period that will run about $100 per week, adding another $3,000 for the special formula over the entire time Willi is in treatment.

When Willi is hospitalized, all drugs and meals are covered, but his treatment team says he will likely also require medications after the transplant, that will not be covered for the 100 post-transplant days he will spend in Calgary receiving inpatient care.

They were unable to provide an estimated cost for the drugs until they know for sure which medications Willi will need.

Bovencamp estimates that expenses may run as high as $10,000 in all. “That’s a daunting amount. All we can do is hope that if we get this information out to the public, it will help.”

She is working with the Alberta Children’s Hospital Social Services team to help the Fehrs understand Willi’s disorder, and she says the team in Calgary has also been assisted by two young Mennonite women who are helping Elizabeth and Ben with translation.

Bovencamp has set up an account at the ATB in Lougheed to accept donations from any ATB in Flagstaff, and with the assistance of St. Andrews United Church in Lougheed, receipts can be given for donations over $20.

One service group in Lougheed has already donated $500 to the family, and a local business has donated another $400.

She has also offered her assistance to speak to anyone who is interested in helping further.She may be contacted via email, at h_bovencamp@xplornet.ca, or by phone at 780-386-3795. Donations may be mailed to P.O. Box 26, Lougheed, AB T0B 2V0.