Andrew Fimbel was just 5 1/2 months old when he died of spinal muscular atrophy (SMA) in February 2001, but he lives on in the hearts of his parents, Gina, 26, and John, 24, Fimbel of Fair Lakes.
His memory is also honored through a nonprofit foundation his parents began in his name. It's Andrew's Toy Box, and it provides toys and books to children with serious or terminal illnesses.
A stranger had sent a similar gift to Andrew in the hospital and, said his mother, "My husband and I were so lucky to have all the support we did, so we wanted to give something back."
Although the Fimbels had never before heard of SMA, they soon learned that it's the No. 1 genetic killer of children under age 2. But Andrew wasn't diagnosed until 7 weeks, when his doctor noticed he wasn't lifting his head and kicking his legs like he should.
A pediatric neurologist gave them the heartbreaking news. "He said Andrew had less than a year to live — just take him home and love him," said Gina Fimbel. "I was in shock. I wanted to just stop everything and come home and mourn, but I had a 7 1/2-week-old baby that needed my time and attention." So, making the most of each day with him, she "said the things I wanted to say and held him for hours on end."
There are three types of SMA; type 3 isn't diagnosed until adulthood, type 2 patients usually live in wheelchairs until early adulthood; and type 3, like Andrew had, is most severe and terminal. He had trouble swallowing and couldn't turn from side to side, himself.
After he died, the Fimbels depended on their families and their faith in God to see them through. "It was hard, but you go on because you don't have a choice," said Gina Fimbel. "Andrew was able to die at home, and that gave me a lot of peace. I wouldn't have had the courage [to care for him at home] without the help of Hospice of Northern Virginia and my wonderful nurse, Mary Ellen Glace. My husband and I were scared, and just having someone to talk to was good."
During Andrew's illness, the Fimbels joined an SMA support group, and a woman whose daughter, Deirdre, had died of type 1 sent him a big box of toys in her memory. "Andrew couldn't play with toys like healthy children, so she sent vivid, colorful books, music tapes, CDs and lightweight toys that he could hold," said Fimbel. "She chose everything with great care, and he enjoyed it very much."
"When I got this beautiful, thoughtful package from a total stranger, it really touched me," she continued. "I cried with happiness. When you're caring for a sick baby, you feel very alone and isolated from the world. So just to know that someone was thinking of us made us feel very good."
Fimbel didn't think of doing something similar until after Andrew died. They obtained names of other SMA families from the support group and started sending packages out to babies and children who had type 1.
The SMA statistics are staggering: 13,000 children die from it each year, and 1 in 40 people are carriers. Testing for it may be done during pregnancy; or carrier parents choosing in-vitro fertilization may have their eggs tested and only the healthy ones implanted.
Fimbel says Andrew's Toy Box has helped her heal because it's kept her focused and busy. Still, she said, "It's hard not to have your child to touch, to smell — and it's something you think about every day. Your head says, 'There is a plan,' but my heart says a completely different thing."
She and John celebrated their two-year anniversary March 3 and, despite the pain, he believes the tragedy brought them closer: 'You get to see how one another acts in extreme circumstances. And you realize that, when you get mad about something stupid, it's really about Andrew's death."
Putting it in perspective, he said, "You just take it as it comes but, at the end of the day, you've got to say, 'I'm not in control here, the track is already set — I'm just strapped in for the ride.' It doesn't pay to get angry. You have to live every day as if it's your last. Andrew was sick, so knowing he's in a better place helps a lot. And I think a lot of healing goes on through Andrew's Toy Box."
The Fimbels began working with Inova Fairfax Hospital for Children, providing care packages just for SMA children, but then they broadened their horizons and reached out to all children with chronic or life-threatening illnesses. They leave referral forms at the hospital and receive faxes back with the child's name, age, illness and type of toys he or she would like.
To donate toys or money to the cause, or for more information, call 703-803-4554 or see the Web site, www.andrewstoybox.org. For more information about the SMA support group, call 1-800-886-1762 or see the Web site, www.fsma.org.
John Fimbel advises parents of seriously ill children, "Instead of mourning what your child isn't, celebrate what your child is." Indeed, he says experiencing Andrew was worth it because "I learned a lot more about myself and about life and what's important and where we all need to focus. Andrew was my hero; I look up to him as the picture of innocence — it doesn't get any better than that."