Her only daughter, 2-year-old Mearan, died last October of a rare, then undiagnosed muscular disorder.
Three months later, Suzi Pohl's husband, Kyle, a sergeant in the Army National Guard, was called to active duty and sent to Iraq.
And a couple of weeks ago, three Twin Cities specialists gave the Brainerd family more devastating news -- their youngest son has the same progressive form of the genetic disorder that claimed the life of his baby sister. And in all likelihood, Kyle has it, too, though he may have the less progressive adult-onset form of the disease.
"It's hard, it's very hard," Suzi Pohl said last week as her eyes began to swell with tears. "Today was a real hard day for me. I cried my eyes out and prayed. The hardest part is my son is going to suffer like Mearan did. I don't want that for my son. It just tears my heart out."
Since her husband's deployment last February, Suzi Pohl has been both a mother and father to their three sons, Gavin, 13; Kegan, 10; and Bracken, 6. Kyle was able to come home on a 30-day emergency leave in June after a Twin Cities pathologist, who performed the autopsy on Mearan, determined that she died of Spinocerebellar Ataxia Type 7, or SCA7, a hereditary disease. But he was sent back to Iraq after his leave ended.
Dr. Galen Schauer, pathologist and head of the autopsy service at Children's Hospitals and Clinics in the Twin Cities, diagnosed Mearan with SCA7 after her death. Of the hundreds of autopsies he's performed, he had never seen a case of SCA7 until Mearan's diagnosis.
"This is an extremely rare disease," said Schauer. "There are very few described autopsy cases in children this young."
Schauer said SCA7 more often is found in older adults whose symptoms typically emerge later in life. It's an inherited genetic disorder that is passed directly from parent to child and gene mutations that cause the disease become greater as it is passed to younger generations, he said. More often, it isn't until a child has a progressive form of this type of disorder that it is discovered that adults in the family also have the disease. Kyle Pohl has a strong family history that suggests members of his family are affected by this disease, said Schauer.
"It's likely that Kyle has it also because it's shown in children who have this disease that paternal transmission tends to cause very long repeats," Schauer said of the chromosomal mutations that cause the disease.
Symptoms of the disorder include progressive loss of muscle coordination, a specific type of retinal degeneration in the eye that results in blindness and a family history that suggests there may be other affected family members.
Mearan was able to say a few words, but suddenly her health became progressively worse. She lost muscle control, her eyesight and had problems with swallowing before her death.
While Suzi Pohl said there have been subtle signs along the way that Bracken may have health problems, it wasn't until the past few months that it became obvious something was wrong. He is rapidly losing his eyesight, he becomes easily fatigued and often falls and loses his balance. She's had to put his training wheels back on his bike for him, but he's lost so much of his coordination that it's become dangerous for him to ride it. He wears sunglasses outside because of his rapid loss in eyesight.
It's become very frustrating for this outgoing little boy, whom his parents nicknamed "Scooby," after his favorite cartoon character, Scooby Doo. He's in kindergarten at Garfield Elementary School.
Bracken's throat muscles become fatigued when he eats and he begins to choke, which has caused a few frightening moments for the family, still grieving for the loss of Mearan. Two weeks ago he was clinically diagnosed by three specialists at Minneapolis Children's Hospital -- his pediatrician, a pediatric neurologist and a pediatric ophthalmologist -- with SCA7. The family is still waiting to hear this month on the results of his blood tests that will confirm that diagnosis.
While the two oldest boys have no symptoms of the disease, they do have a 50 percent chance that they, too, are affected. They have been told what is going on with their youngest brother, but Bracken has not been told. Doctors told the Pohls that Bracken should not be told he has the same disease as his sister. It will be too hard on him.
"I feel like I'm lying to him," said Suzi Pohl. "He hasn't asked, but what do you tell a 6-year-old? He saw Mearan die. She was his best friend."
"His frustration level is humongous. Part of the reason I wanted to tell the (older) boys is so they make concessions for him. Now they really watch out for him."
Pohl said before Mearan died she made a promise to her daughter that she would make sure other families wouldn't have to go through what they did, not knowing what was wrong with her. She took care of all her daughter's personal needs until her death. It devastates her to know she'll soon be doing this for her energetic youngest son, who loves to climb all over her and sings Bon Jovi songs at the top of his lungs. Doctors have indicated that Bracken may live only one to two more years.
"There will come a day when he can't play Mancala (his favorite game) with Mommy anymore, but for now, he can do that," said Pohl.
This is why it is important for Kyle Pohl to return home. When it was learned that he in all likelihood has SCA7, the military granted him a medical military discharge. He returned to Fort Carson, Colo., Wednesday but he may be stationed there for up to seven months until his discharge papers are finalized and he undergoes medical testing. He has been in the National Guard for 18 1/2 years.
Seven months is far too long for Kyle to be separated from his son, whose eyesight is growing progressively worse, said Suzi. She has appealed to Congressman James Oberstar for help and to anyone else who will listen, to find a way so her husband can return home soon to help his family through this ordeal.
"We just pray they will give him passes to come home," said Suzi Pohl. "His unit is in Iraq. There is nothing he can do in Colorado. If he were home, he could be spending time with Bracken. His eyesight will go very rapidly and I can't imagine if he can't see his dad."
Suzi Pohl has kept an online journal where people can log on and find updates on her family. It's become a support system for her. Strangers have told her they've been blessed by her family and her faith. She said one day her goal is to develop a Web site that will help families affected by SCA7 to find information that is easy to understand.
"I'd like to say, 'Forget it, Lord,' and 'Why me?,'" said Pohl. "There's a reason why all this is happening. I don't know what it is, but there's a reason. I thought some day we'd settle down and have a normal life. I've given up on that, on having a normal life."
Kyle and Suzi Pohl's 14th wedding anniversary is Tuesday. This will be the first anniversary they've spent apart.
The Pohl's family Web site is www.caringbridge.org/mn/pohl/.
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