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Hope for Max

Families of Spinal Muscular Atrophy

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Hope for Max
10/05/08 - 08:23 PM
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Living for the moment: that’s what many children with spinal muscular atrophy do.  The disease is the number one genetic killer in infants and toddlers.

On Sunday night, ABC’s Extreme Makeover Home Edition featured a family with two children who suffer from the disease.  They’re not alone.

News 13 spoke to a South Carolina family visiting the panhandle who’s child is also fighting the disease.

Maxamilian Patrick High seemed to be normal at birth.

Ten months later doctors delivered the worst news a parent would want to hear.

“Your son has Spinal Muscular Atrophy.  There’s no treatment, there is no cure. Take him home and love him, because he’s not going to be with you for very long,” says his mother, Traci.

SMA is a Motor Neuron Disease.  It’s slowly costing Max control of his arms and legs. He can’t even lift his head.

“Today as we see him is the strongest he’ll ever be.  Tomorrow he can only be weaker,” says Traci.

Max has also lost the ability to swallow.  His parents tube feed him through a port in his abdomen. Max also has a high risk for infection.

“He doesn’t have the ability to cough.  Like a normal person would.  So getting rid of a cold for him, controlling secretions and mucus for him is very difficult so pnemonia is a big problem for these children,” she says.

SMA affects 1 in 6,000 babies.  1 in 40 carriers are infected.  Both Traci and her husband Aaron are carriers.

“There’s a 25% chance that every time we have a child that child would have SMA,” says Traci.

“Before we anticipated having 3, 4, even 5 children.  Now it’s made us reevaluate whether we can even have another child,” says Aaron.

Now the couple savors every minute with Max.  He’s diagnosed with Stage 2 SMA, which commonly carries a life expectancy of 2 years.  Max turns two next month.  With improvements in respiratory and nutritional care, his parents hope for a long life.

“Now that we’ve gotten some help at home with nursing it’s freed up more time to where we’re not just the therapyst or his nurse or doing the respiratory treatments we can actually hang out with him and take him out,” says Aaron.

“You go into having kids and you think it’s going to be great and you’re going to get to see him grow up and they’re going to play base ball or they’re going to get straight As we know that’s not going to be our reality, but we love him for the child he is right now and the smile he gives us in the morning.  That for us is an accomplishment getting him through the night,” Traci says.