March 1, 2013. Practicing for the big race has been intense and quite a challenge. You have participated fully and that is good. Over time, the practices have been more challenging. Now they are becoming quite rewarding. Many quit at this stage. But not you. It is within you not to fail. In fact, you hate failure. Others can endure it because they are not willing to pay the price to win. The Lord says unto you today, “Run, run, run. Run until it hurts so bad you cannot bear the pain. Then run some more. Every step you take is bringing you closer to the ultimate prize of winning. Keep the attitude and strong hope that the crown will be yours. I am with you all the way. Pick up the cross, run with it.”

PORT ST. LUCIE – The baby girl was supposed to have died six days before, when her heart stopped three times in one night, and her parents heard the worst words imaginable:

“Your daughter is going to die,” the doctor said then of Izzy Powell, born with her twin sister Ellie just four months earlier.

They wanted to hold her one more time. The dad was Landon Powell, a 30-year-old catcher new to the Mets; he stood while his wife Allyson rocked in a chair with Izzy.

What had this child endured? More than 70 transfusions, 14 surgeries, eight weeks of chemo, four or five spinal taps, a liver biopsy, a skin biopsy, and a bone marrow biopsy. Ribs cracked from the inside by a liver that inflated large enough to squeeze her lungs.

Now, when she was supposed to be slipping away, Izzy only rocked and breathed with her mommy. For 24 hours, they sat in that chair.

When mom finally needed sleep, Landon took over. A few times, Izzy opened her eyes, flashing what always struck Ally as the peace and wisdom of a much older person.

Mom and dad spent six days begging for more time with this child who was leaving. But this was something they could not change, or decide, and it happened on Jan. 25.

“I held Izzy tight in my arms,” Landon recalls just one month later, hands on his knees in the Mets’ dugout at eight in the morning, sobbing.

“We just talked to her, and prayed, and she passed away.”

***

How is it possible to tell this story, when it is so raw and new, when you are trying to make a ballclub, and remain whole for your two children?

In ripping off this Band-Aid so soon, the Powells can bring attention to Donate Life, an organization that builds awareness for organ donation, and Donors on the Diamond, their own charity devoted to that cause (Izzy became an organ donor after she died).

Ally explains it like this:

“It was always like she had a purpose, and she was comfortable with it. She was the toughest little baby I have ever seen. I am so glad she came into our life, and we owe it to her to not just let this go.”

It is also a matter of faith. You hear about church a lot in sports, in references often wrapped in cliche, but this family’s relationship with their God is private, deeply felt, and essential.

“She was a child who was sent here, we believe, with a divine purpose of showing people how much faith can do,” Landon says, citing the nearly 40,000 likes on the Prayers for Izzy Facebook page, and the way his certainty about heaven saved him from the darkest corners of grief.

“Honestly, people can believe what they want to believe,” he says. “I’m not trying to force my religion on anybody. That is just what I felt. If I didn’t have that relationship with God, I would not have made it through this.”

So, for all these reasons – for Izzy and her twin sister Ellie and three-year-old brother Holden, for organ donation awareness and for God and for you, if you’re a parent and need to be reminded sometimes how lucky you are, and how wobbly it all is – the Powells want to tell you what happened.

***

The girl began as a miracle, popping up on an ultrasound screen where she didn’t belong.

Ally wasn’t even supposed to be pregnant again, not after Landon learned in 2009 that he had autoimmune hepatitis, a condition that might eventually require him to undergo a liver transplant. This can be a hereditary condition, but a definitive link was never established between it and the rare disease that killed Izzy.

Some positive action came of this, as Landon founded Donors on the Diamond. But his medication made it nearly impossible to conceive, and after almost a year of fertility treatments, doctors told the Powells that their family would probably not grow again.

Then, while Landon was in his final spring training with the Oakland A’s, the organization that made him a first-round draft pick in 2004 and valued him for years as a top defensive backup, Ally got pregnant – and so began the couple’s nearly yearlong rotation of joy, confusion and pain.

At the first ultrasound, there was only one heartbeat. The second time, at eight weeks, there was one baby, and a second sack, this one empty. Doctors told Ally it was a “vanishing twin.”

“It will go away,” they told her. “There is actually no baby there.”

At the twelve-week ultrasound, there were two babies and two heartbeats.

“We just don’t understand this,” they told her. “It doesn’t make sense.”

Landon says the the doctors never knew “why that heartbeat didn’t develop until that late in the pregnancy. She was kind of a miracle from the beginning.”

The rest of the pregnancy was quiet, with no signs of distress for mother or twins. On Sept. 10 of last year, when Landon had finished the minor league season and was home in Greenville, S.C., Ally went into labor six weeks early.

The five-pound, three-ounce Powell who outraced her sister became Ellie. Moments later, Isabel arrived at four pounds, two ounces. She seemed like an Izzy.

The girls were premature, but in no extra or unusual distress, and their parents were able to enjoy that throbbing, whooping high that only comes when your babies join you in the world.

***

The doctors were first to notice the faint rash on Izzy’s body. If Landon and Ally were concerned about anyone, it was Ellie, who had lost some weight and wasn’t taking her bottle. Izzy was eating, breathing without oxygen support, and looking healthy.

When she went for tests at two days old, it didn’t seem particularly alarming – but from that moment, there was no more peace. Izzy’s platelets were low and her liver levels high, an ominous combination for premature babies.

The first suspect was cytomegalovirus, or CMV, which can lead to hearing loss. That was enough to freak out the new parents, but three days later, the tests came back clear.

While Landon and Ally were still sinking back into their chairs, relieved, the doctor said, “This is good, but now we have to figure out what she does have.”

Landon and Ally Powell with twins Izzy and Ellie.

Three weeks passed. Ellie grew stronger and went home, while Izzy’s rash intensified, her condition a building source of mystery and fear. Landon and Ally entered a natural rhythm of trading strength and anxiety, of picking each other up. This was no longer a simple time, or a happy one.

Landon’s first breakdown came when he was driving home from the hospital one night, the tears arriving in a flash flood that forced him to pull over and call Ally.

“I just don’t want to be alone right now,” he said. “I can’t stop crying.”

This was Ally’s day to be solid. “We’ll get her healthy, we’re get her home, everything will be fine,” she told him.

***

It was around this time that the hospital in Greenville conceded.

“We’ve never seen anything like this,” they told the parents. “We don’t know what it is.”

Doctors there had one final suggestion: Hemophagocytic lymphohistiocytosis, or HLH. The hereditary condition was so rare, they told the Powells, that of the approximately four million babies born in the United States each year, eight or nine had HLH. Eight or nine.

In the simplest terms, a person with HLH has a wildly aggressive immune system, so aggressive that it fights off healthy cells, too. For a baby, a bone marrow transplant is the only escape.

“Her body was just attacking all her cells, and trying to kill her from the inside out,” Landon says. “Her immune system just went from zero to 60 to 100 to 400, and it just wouldn’t stop.”

They transported Izzy by medevac from Greenville to the Cincinnati Children’s Hospital, the best facility available for the treatment of HLH. Dad went along in the helicopter, while mom had to stay home with Holden and Ellie.

If Landon lives another 60 years, he might not see anything as wrenching as when Ally loaded her baby into the ambulance, and watched her family split.

***

As fall became winter, Landon and Ally commuted from Greenville to Cincy, parenting in ways they had never imagined.

“I’m having to sit with her in the hospital all day and try to love on her, hold her hand and let her know she’s not alone,” Landon remembers.

Through the holidays and into January, their fear grew into hope. The chemo was working, and Izzy’s HLH, went into remission. They found a willing bone marrow donor.

Then Izzy’s liver began to expand. It pressured her lungs and cracked her ribs. The doctors did not know why, but they knew that the baby could no longer breath without life support.

On Saturday, Jan. 19, the Powells had just pulled into their home in Greenville from Cincinnati when the hospital called.

“She’s really struggling,” they were told. “If we call you, we might need you guys to get in the car and come.”

They packed a bag and watched their phones. The call came within an hour.

From 10 at night until four in the morning, Landon and Ally drove. They talked, and cried, and listened to music. Ally slept. They were terrified, but did not believe they were traveling to watch their child die.

“With our faith we just felt like, she was this miracle baby who all of a sudden, at 12 weeks old, appeared in my wife’s womb,” Landon says. “She has 40,000 people praying for her on Facebook, people who have voiced that their spiritual walk has strengthened because of this girl and how she is fighting.

“All these great things are happening because of this little girl and her struggle, so why would God make her just to die? If he is going to do all this, and make these miracles happen for her life, then we felt like it had to have a positive outcome.”

They did not yet realize how the story was supposed to go, that Izzy’s time here was about to end, that she had accomplished what she could, and was ready to move on.

After those six days in the rocking chair, which ended when Izzy passed, Landon learned another way to see it:

“We prayed for God to heal her, and he did heal her – just not in the way we thought,” he says.

***

Landon Powell is finished with his story now. He is still sitting in the dugout, massive backstop hands pressing on his knees, jaw tight and eyes full.

“You know, ultimately, earth sucks, in my opinion,” he says, staring down the Florida sun.

“The time we have here is nothing compared to what we have in heaven, and I’m looking forward to that day, that I get to go there and be perfect, and have a perfect world and a perfect life.”

This is why he can tell his story, and compete for the backup catcher job, and smile for Holden and Ellie, and lift up his wife when she needs it. The belief that Izzy brought good to this world and has moved on to a better one – some will accept it, some will not, but there is no question for the Powells.

“I believe she is there right now singing and dancing and twirling,” Landon says. “I look forward to seeing her again one day.”

***

Landon and Allyson Powell founded Donors on the Diamond, an organization that raises funds and awareness for organ donation. They partner with Donate Life South Carolina.

To learn more, visit donatelifesc.org and donorsonthediamond.org.

For God’s Glory Alone in the Love of our Lord Jesus Christ, Dewey Sharon and Family!

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