It was a moment no parent ever would want to relive. 

Ryan Richardson lay dying after a high fever caused his parents to rush him to
the emergency room. Doctors at Holmes Regional Medical Center in
Melbourne said a virus was to blame. Then, double pneumonia hit. Both lungs
filled with fluid and were collapsing. His body was shutting down.  (photo)

"My husband and I asked everyone to leave the room, and we laid in the bed
with him," said his mother, Sherry. "We put our hands on his chest and prayed
that he not suffer anymore. Honestly, we didn't expect him to live, but he
survived the night." 

Surviving is nothing new for Ryan, who at 3 months was diagnosed with
Niemann-Pick disease, a rare genetic condition that usually takes lives before
school age. He can't metabolize cholesterol properly, which has affected his
liver, spleen and brain. 

The disease is responsible for serious bouts of sickness and an emotional
roller-coaster ride for his family. It has left Ryan's limbs lifeless. He can't
speak. He can't sit up or stand. He often chokes and has seizures. Only his
head moves. 

Doctors said Ryan would be lucky to survive beyond his second birthday. On
Thursday, he turned 4. 

More importantly, he celebrated at home with a  Barney cake, balloons and
grilled hamburgers. It was a miraculous milestone, considering Ryan spent more
than two weeks at Holmes in critical condition. (photo)

"That was my gift from God," said Sherry of her son's return home on 
Wednesday afternoon. 

Up until that point, the Melbourne boy struggled to stay alive. His family, 
including father Christopher, and sisters, Jordan, 5, and Rachel, 10,
cried. Loved ones circled his hospital bed, heads bowed in prayer. His mother
gave directions to remove all medical equipment from the couple's home, not
expecting him to return. 

But just when all hope was lost, Ryan regained strength. The virus gone, his
organs began to function again. 

"I think Ryan fought to be here on his birthday," Christopher said. "He's never
gone this far downhill before. It's like someone holding you under water. You
can't breathe, and you're scared to death." 

Earlier this week at Holmes, Ryan's eyes were sleepy but open. Tubes
extended from his frail frame, and a purple oxygen mask helped him breath. 

The beep of a heart monitor provided background music. Numerous monitors
with jumping lines crowded the space, but handmade cards signed by
neighbors lent warmth to the room. Stuffed animals lined the window ledge
and a flag decorated with a Dalmatian and fire hat hung on the wall, a donation
from the Melbourne Fire Department. 

An occasional smile crossed Ryan's face for visiting friends and family amazed
by his will to live. 

"Ryan is such an inspiration," said Heather Brownlie, a friend for two years
who stopped by. "He's such a fighter. This recovery, well, it's hard to find
words. It's mind-blowing. 

"About a week after he arrived at the hospital, we were making funeral
arrangements and I had come to say my last goodbye," Brownlie said. "Ryan's
strength shouldn't amaze me, but it does." 

Although he has arrived home, Ryan is not out of the woods yet. The
Richardsons know Ryan's situation could change for the worse at a moment's
notice.

That's the hard part, not knowing when the end will come. So they wait and
watch, all the while enjoying every moment with the boy. They have taken him
camping. He's been to Mexico. And each year, there's been a grand birthday
event. 

"I know it's the inevitable," Sherry said. "The outcome has just been delayed a
bit." 

The family has prepared for Ryan's death for most of his life. At a few weeks
of age, his mother realized he had an enlarged abdominal area, a telltale sign of
Niemann-Pick. But it was only after doctors suspected developmental delays
that tests confirmed Ryan had the rare disorder. 

At 4 months old, Ryan had his oversized spleen removed to ease his breathing
problems. By age 2, he was receiving physical and speech therapy and
learning sign language to help cope with his condition. 

Niemann-Pick has since robbed Ryan of all ability to function. Still, he seems
happy and content, mostly because of family support, said Maria Seelman,
Sherry's cousin. 

"What keeps him strong is his devotion to his mother," Seelman said. "She's
also devoted to him. She has slept at his bedside since the moment he was
born. There is such a bond there." 

Seelman also visited the hospital last week to say a final farewell. 

"We've gone through the mourning process several times," Seelman said. "It's
draining." 

Sherry doesn't cry in front of her son. She doesn't allow anyone else to cry,
either, saying he deserves to be surrounded by happiness and joy. 

But when he's not looking, she cries. Like when she talks about watching her
son wither away. 

"I know things aren't going to be the way they were," Sherry said. "I don't
think about graduations or him growing up. It's too devastating." 

Instead, she takes it a day at a time. 

Just a day before his surprise hospital release, she plugged up a laptop DVD
and put on their song. Sherry grabbed Ryan's arm and danced with it as
Fleetwood Mac sang, "Don't stop thinking about tomorrow." 

"We've been practicing this song since Mother's Day," she said with a smile. 

It's the song they will play during the National Niemann-Pick Foundation
Conference in Orlando on July 22 through 24. The Richardsons are this year's
host family for the annual event. 

"Sherry is a woman who has so much compassion, not only for her precious
little Ryan, but for all the children with Niemann-Pick," said Nadine Hill,
director of the National Niemann-Pick Disease Foundation in Wisconsin. 

Christopher Richardson said it has been difficult watching their two daughters
cope with Ryan's illness. 

"Another hard thing we had to handle was seeing Cole's mom," Christopher
said. "But her visit to the hospital was helpful, because it shows us there is a
life after this." 

Cole Wisnewski died in July 2002 from Niemann-Pick disease. He was 2.
His mother, Serina Wisnewski, visited the Richardsons last week. They visited
her son's grave shortly after his death. Both Melbourne families have been in
touch throughout their children's ordeals. 

"People don't know what to say or understand what we are going through,"
Sherry said. "But Serina does. She said her 'Cole Bunny' would be there to
guide him when the time was right. That was difficult to hear." 

For Sherry, one of the hardest questions she's had to ask herself is what will
happen after Ryan's death. What will she do? 

"Right now, my day consists of feeding, watching and taking care of Ryan,"
she said. "That's been my life. I guess after Ryan is gone, I'll need to mother
my daughters and be a good mother to them. They've sacrificed a lot, too." 

The Richardons said people should not feel sorry for them. They've enjoyed
years of wonderful memories. They have prayer and support. Most
importantly, they have Ryan to thank for learning what's important in life. 

"I didn't think I'd ever have this day," Christopher said. "For us, every day has
been a blessing."