Bravely facing a deadly disease

By SHERRI GALLANT

Lethbridge Herald

 

Carrie and Rob Anhorn have no time for parents who complain about their children's exuberant energy.

For the Anhorns  ~ whose exquisite, bright-eyed child lies limp as a rag doll ~ every day their daughter keeps breathing is a gift.

Kyleigh has Spinal Muscular Atrophy, a condition like Lou Gehrig's Disease which destroys the nerves controlling voluntary muscle movement.  Of children diagnosed with SMA before age two, most will die before their second birthday.

Neither the Anhorn's nor anyone in their family had heard of SMA before Kyleigh's diagnosis, yet it is the biggest genetic killer of children under two.

The more they learn - most of it through the Internet and an on-line SMA parent support group - the more they'd like to share their experience to increase awareness about the disease.

"It could happen to anyone" Carrie says.  "Yet nobody's ever heard of it."

Kyleigh can not move her head, but she can smile.  Her arms and legs lie flaccid, but she can wave her hands and wiggle her toes a little.  Her keen blue eyes follow people as they move around the room, and she loves to watch television.  She just cut her first two teeth.

"Her life could end tomorrow, or next week, or next month, or three years from now," says Rob, rocking his daughter.

"We don't know.But it bothers you when people take their children for granted."

The Anhorns weren't overly worried when a Calgary specialist suggested SMA could be the reason why their baby, then six weeks old, was still very "floppy."

"When we drove home from that appointment we were happy, because we thought, 'OK, all she needs is some medication and some physiotherapy and she'll be fine.' " Carrie recalls.

"Then that night after she went to bed I jumped on the Internet and looked it up, and thats when we found out what we were dealing with."

Eventually, they came to accept their situation.

"You don't think about it all the time, because you'd go crazy or get divorced," says Rob." You have to work, you have to pay the bills."

"My grief is for all the things I know she won't be able to do," Carrie says." Things like walking down the aisle or starting kindergarten."

When she sleeps an apparatus is strapped over her nose that provides positive airway pressure to help her breathe. A suction machine is needed frequently throughout the day to take care of her saliva, which she cannot swallow.

The modern equivalent of an iron lung sits ready to provide plunger-like assistance if chest secretions become a problem. Pneumonia is what ends many SMA children's lives.

She was born April 23rd, and by about four months, Kyleigh was losing her ability to suck and swallow. By October, a gastric feeding tube was inserted at Calgary Children's Hospital.

Her specialized formula costs $250 a case and lasts for 20 days. Alberta Resources for Children with Disabilities subsidizes the cost of formula and provides someone to help in the home four hours a day.

Aids to Daily Living has provided support for Kyleigh's equipment, but the Anhorns are increasingly in debt. Because Kyleigh needs constant attention, Carrie can't return to her job.

"If it could be a perfect world, all her equipment would be covered and we wouldn't have to fight to get it for her," Carrie says. " And doctors wouldn't tell you to just take your child home and let her die. Thats happened to us more than once."

Kyleigh's bones will weaken over time since she has no muscle activity to keep them strong.

"Being on her back all the time also means her world is flat and two-dimensional," Carrie says. "Raising her up in a stander would make things three dimensional and allow her to see things in a way she's never been able to. But they're $4000."

Kyleigh stops breathing in a conventional car seat, so taking her out of the house is problematic and Carrie rarely leaves the house.

"It's interesting, you know," Carrie says.

"If we gave her up for adoption, someone else would get $1000 or more a month for her care.  But for us, there's nothing like that.  If I went back to work, we would have to hire a nurse and a respiratory therapist to look after her.  That would cost $50 an hour, and my job pays $10 an hour.  I think we've calculated that the first year of her life is going to cost $20,000 and that's not baby stuff, just medical expenses."

Service clubs, local unions, and the Anhorn's church have all helped the family, Carrie says.

For more information about SMA, visit www.our-sma-angels.com/kyleigh or e-mail carrie_anhorn@yahoo.com