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Family prepares to face rare disease a second time

By Kathy Aiken | Posted - Aug. 26, 2010 at 10:18 p.m.


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UPDATE: Lindsey Coleman had the couple's baby girl Friday morning. Margaret Rachel came in at 6 pounds 10 ounces. Mom and baby are doing well. - - - - - -

SALT LAKE CITY -- A Salt Lake City family is getting ready to welcome a second child into their home. But their joy has been tempered, in part by challenges the family is already courageously facing.

Whit and Lindsey Coleman are the picture-perfect couple.

"We met in junior high. I think I had English with him in seventh grade," Lindsey said.

"We were friends for a long time, and we dated, finally, in high school," Whit said. "It took a long time for it to finally come full circle, I would say."

Whit and Lindsey were married six years ago, and two and a half years later they learned Lindsey was pregnant.

"It was a little scary, just thinking of the future and what it would bring," Lindsey said.

What it brought was a beautiful baby boy. Jonas Mathie Coleman was born in December of 2007.

Jonas weighed 8 pounds 3 ounces and had huge blue eyes. But six weeks later, those eyes were about the only things that showed much life.

What is ... Spinal Muscular Atrophy
SMA is a rare, inherited disease characterized by muscle atrophy and loss of motor function, caused by the absence of or defect in the Survival Motor Neuron 1 (SMN1) gene. The SMN1 gene encodes for survival of motor neuron (SMN) protein. This protein is critical to the survival and health of motor neurons, which are nerve cells in the spinal cord responsible for muscle contraction. As the motor neurons become unhealthy due to the reduced SMN levels, muscles weaken and become atrophic. (Please click here for a more complete introductory discussion about Spinal Muscular Atrophy)
- Spinal Muscular Atrophy Foundation

"[He was]just very complacent, very calm; I guess you could almost say lazy," Lindsey said. "[Doctors] said the best case scenario was infant botulism or worst case would be SMA, 'but don't look it up, and we'll just go from there.'"

Jonas was diagnosed with SMA, or spinal muscular atrophy. It's a disease that affects the body's voluntary muscles; eventually the patient loses the ability to function.

"With the type he has of SMA, which is type 1, most of them don't live past the age of 2," Whit said.

"It was hard. It was like the end of the world almost, it felt like," Lindsey said. "Our hopes and dreams of having this little boy were going to be shortened very quickly."

So the Colemans have made the most of every moment, taking Jonas swimming, hiking, even several trips to Disneyland. But for the past five months, Jonas has needed to be on a respiratory machine that helps him breathe. At night, Lindsey and Whit take turns moving Jonas to prevent bed sores.

"We might have to, as a family, decide when is it too much? When are we trying too hard?" Lindsey said. "And that's a very hard thought to have to think about, letting him go."

"Jonas is such a blessing, in that our lives are so much more rich and full of love than I think they ever could have been without him, and that's because we are focusing on the moment. We are cherishing each day that we have," Whit said.

Within the next few weeks, Jonas will have company. Lindsey is expecting their second child. While their chances for having a second baby with SMA were low, their baby girl will also be born with the disease.

"I'm hopeful because it's powerful that we know that this baby has this [disease] before they present with symptoms; so I'm hopeful she can be stronger than Jonas," Whit said. "I can just see them now, laying next to each other, looking at each other, and just being able to communicate on a level we don't understand."

Communication that may only come through the eyes of a child.

For information on Jonas Coleman and his family, including a way to donate* to SMA research, CLICK HERE.

E-mail: kaiken@ksl.com

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*KSL.com has not verified the accuracy of the information provided with respect to the account nor does KSL.com assure that the monies deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account you should consult your own advisory and otherwise proceed at your own risk.

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Kathy Aiken

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