Thursday, November 22, 2007
Five-year-old Could Face Marrow Transplant
BY BECCY TANNER
Michelle Colgan counted her new granddaughter's fingers in the birthing room.
One, two, three, four.
She counted again.
Then a nurse blurted out: "Oh, look, she doesn't have any thumbs and she's missing an ear."
Alicia Reed had been born with Fanconi anemia, a rare, terminal disease. Many patients eventually develop acute myelogenous leukemia.
Five years later, Colgan is raising her granddaughter in Wichita and traveling occasionally to Cincinnati for treatment of Alicia's leukemia, which showed up in a biopsy late last year.
Medical bills have mounted. Rent, utility and travel costs have been hard to pay.
Colgan is seeking help from Share the Season, which offers one-time aid to people affected by unforeseen hardships.
"I am forced to spend every cent I have saved for Christmas to get her to the hospital," Colgan wrote on her application. "Every moment the Lord gives her with us is the best gift ever."
Colgan says she and Alicia have been inseparable.
She has legal custody of Alicia and considers the 5-year-old her best friend.
The little girl jokes and "high fours" strangers. She smiles and takes the doctors' poking, prickings and proddings good-naturedly, her grandmother said.
She's had her blood tested and had four bone marrow biopsies in the past year.
She has survived two surgeries, one where her index fingers were moved to the thumb positions; another to cut muscles to uncross her eyes.
Now, she may be facing a bone marrow transplant within six months.
"Alicia is giving this fight her all, and she deserves all the help we can give her," Colgan said.
Fanconi anemia is a rare, recessive disorder: If both parents carry a defect in the same gene, their child has a chance of inheriting the defective gene.
There is no cure. Few children who have it live to be adults. But Colgan says the family has hope: An international support organization called the Fanconi Anemia Research Fund is making new discoveries about the disease every day.
The closest doctors who specialize in the disease are at the Cincinnati Children's Hospital Medical Center. Before last year, the Colgans went once a year for Alicia's checkup.
Now, they go every three months. Soon it may be more often.
Next week, the family will travel again to Ohio for a biopsy.
Colgan, a manager for EcoWater Systems in Wichita, hopes Share the Season can help.
'Gift of hope'
Last year, Share the Season raised more than $180,000 in community donations, a record. It helped 207 families that included 679 people.
"Share the Season is a wonderful program that provides a special gift of hope for families that are normally self-sufficient," said Cheryl Warne, director of emergency services for the Wichita Salvation Army.
The program offers one-time aid to people who haven' been helped by charities in the past. The Salvation Army screens applicants.
The average recipient gets about $700 in assistance, mostly to pay mortgage or rent and utility bills.
"It is heart-warming to see the faces of the recipients light up with joy when they are told their requests have been approved," Warne said.
In its eighth year, Share the Season is a project of the Salvation Army, the Wichita Community Foundation and The Wichita Eagle.
Through Dec. 31, The Eagle will feature a daily story of a family in need and tell how readers can help. Most of those featured will remain anonymous, but their need will be verified by the Salvation Army.
Share the Season is one of the most popular programs launched by the Wichita Community Foundation, said executive director James Moore.
"This is one that seems to gather people's attention and focus," Moore said. "Donors are aware of it, and each year they put it into their plans to help people."
What makes Share the Season successful, Moore said, is that payments are made directly to vendors, such as the bank, the landlord or the doctor.
The foundation provides seed money -- $25,000 this year. All donated money goes to help the applicants.
Some donors provide services to help, such as dental work, hearing aids, glasses and even a few used cars.
Last year, a single mother was afraid to smile because of the condition of her teeth.
"Through the years, I had so many of my own teeth taken out because they were so bad, there were only a few left in front and back," she said. "As soon as that story came out, these dentists called about doing implants in my mouth. It was a miracle."
Two dentists teamed to give her $20,000 worth of dental work.
The woman, 46, cries at how thoughtful the dentists still are.
"It was a miracle," she said. "There were just so many people who helped with everything. I never expected something like that."
Reach Beccy Tanner at 316-268-6336 or firstname.lastname@example.org.