Baby battling disease gets new hope

July 29, 2008

Baby battling disease gets new hope

by Megan Baldino
Tuesday, July 29, 2008

ANCHORAGE, Alaska — There was some good news this week for an Anchorage family whose 13-month-old daughter is fighting a rare disease in a Seattle hospital.

Lucy Latta has a rare form of Severe Combined Immunodeficiency Disease or SCID.

Eden Latta says his daughter has no immune system. The Latas recently learned Lucy’s sister is a match for a bone marrow transplant. An operation is scheduled for mid-August.

Still, friends say the family’s house is in foreclosure and the medical bills are mounting.

Eden says it has not been easy.

“My hopes right now are the transplant works and she makes a full recovery, which the doctors are pretty sure that she will be able to make a full recovery,” Eden said.

“We love them,” said Nichole Alch, who is helping organize a fundraiser. “Who wouldn’t want to do something for someone you feel like is your family?”

The With Love for Lucy Latta Fundraiser will be Wednesday night at Anchorage Lutheran Church, from 5:30 to 7:30 p.m. Tickets are $10 a plate.

There is also an auction and raffle.

Contact Megan Baldino at mbaldino@ktuu.com

linkback url: http://www.ktuu.com/Global/story.asp?S=8757689

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Construction of house will take into consideration the special needs of the couple’s two-year-old daughter

July 29, 2008

Construction of house will take into consideration the special needs of the couple’s two-year-old daughter

Christmas has come early for a Centreville family, when it recently found out it is next on Habitat for Humanity’s list for Carleton County.

Daisy Gallant and Johnathan DeMerchant, along with their daughter Katelyn, were thrilled at the news they will soon have a new home to call their own thanks to the Carleton County Chapter of Habitat for Humanity.

Nearly two years ago, young Katelyn was diagnosed with a severe combined immunodeficiency (SCID) called adenosine deaminase (ADA) deficiency, a rare genetic disorder which forced the little one to live in an isolation room.

But thanks to gene therapy treatment, the two-year-old was able to return home for Christmas last year.

Since then, the treatment sessions have been going well, Gallant said, and her daughter is enjoying her childhood.

“We still have a long road ahead with Katelyn, but she is doing well,” said Gallant. “She is the happiest baby I have ever seen.”

And the youngster has even more to smile about now that she will soon have a new house to live in.

Gallant first heard about the opportunity last month, when some employees at the Scotiabank suggested the couple apply for the project – something Gallant said they had tried for last year but did not qualify. Despite being unsure if the family would qualify this year, she said, she decided to file an application.

Not long afterwards, Habitat for Humanity officials dropped by Gallant’s apartment to meet with the family.

“They came for a visit, but they had to be careful because Katelyn is still very susceptible,” said Gallant.

Gallant talked things over and discussed the special needs of her daughter.

Two weeks later, they returned, Gallant said, asking her if she would accept the offer.

“It was incredibly shocking but amazing at the same time,” Gallant recalled.

One key element to the family’s new home that has Gallant excited is Habitat will install features to ensure young Katelyn’s safety – like putting water filters on all of the taps in the home.

Normally, Gallant had to buy bottled water because Katelyn could not drink well water or have a bath in it, she explained,

“Now Katlyn will be able to drink water from the tap,” said Gallant. “She will also be able to have a bath, and I won’t have to worry about the water.”

Gallant expects to be in her new home by winter. It would be great to be in by Christmas, she said, and it certainly would be memorable one. Last year, she was able to bring young Katelyn home for the first time for Christmas

And this year, Gallant said, she hopes to celebrate Christmas in the family’s new home.

linkback url: http://bugleobserver.canadaeast.com/article/367719


Baby bubbly despite ‘bubble boy’ disease

July 4, 2008

Posted on Fri, Jul. 04, 2008
Baby bubbly despite ‘bubble boy’ disease
By DEBRA SKODACK
The Kansas City Star

The first year of any baby’s life is full of firsts.

But 9-month-old Granton Bayless has blessed his parents with a second round of remarkable milestones as he tries to conquer a rare immune condition that has thousands of people praying for him and more than 2,000 willing to share their bone marrow, if he needs it.

Instead, a recent umbilical-cord-blood transplant at Children’s Mercy Hospital has transformed Granton from a frail, nearly immobile patient into a bubbly baby who wiggles when he sees his masked and gloved parents enter his sterile hospital room.

“We are experiencing him growing up again,” said his father, Daniel Bayless. “He is able to move again. He is able to play. He is able to smile.”

Granton of Bolivar, Mo., has a rare condition called severe combined immunodeficiency that prevents his body from producing enough T cells to fight off disease. The condition is often referred to as the “bubble boy” disease because its victims are so vulnerable to infectious diseases that some must live in protective bubbles.

Admitted to Children’s Mercy on March 28, Granton battled pneumonia and respiratory syncytial virus so severe that holes developed in his fragile lungs.

Medical staff placed him on a ventilator because he could not breathe on his own. They inserted tubes into his chest to suction out air leaking from his lungs. They gave him medicine that paralyzed him so equipment wouldn’t hurt him if he moved and so he wouldn’t burn energy or oxygen.

His parents couldn’t hold him for two months.

Now, Granton plays with everything in his reach, including a small light toy saber from his cousin Addie. The ventilator was removed Friday. There is talk about soon removing the lone remaining air tube.

His improvement thrills the family, friends and strangers who have rallied around Granton and who follow his medical saga through daily blog updates posted by his parents.

While Granton awaited the cure of a bone-marrow or an umbilical-cord-blood transplant, five towns with ties to the Bayless family — Bolivar; Topeka and Dearing, Kan.; and Miami and Yukon, Okla. — held bone-marrow registry drives. It was hoped that someone could be a match for Granton or some of the other estimated 6,000 people across the country awaiting transplants. About 2,200 people registered, which amazed officials with the National Marrow Donor Program in Minneapolis.

A bone-marrow match was found for Granton, but not from those drives. All Granton’s parents knew of the match was that the donor was 35 — old enough that she probably would have had respiratory syncytial virus. That meant her immune system already knew how to kill the virus, which was in Granton’s body.

But, Daniel Bayless said, when cells go after the virus, they go after “everything around it” very quickly. There was a chance Granton’s lungs would be rapidly destroyed, he said.

Granton’s parents made the critical decision to go ahead with an umbilical cord-blood transplant, in which cells would slowly attack the virus. Umbilical-cord-blood cells are taken from a baby’s umbilical cord and placenta. If the cord blood is suitable for transplant, it is tissue-typed, stored in a liquid nitrogen freezer and listed on the donor registry.

Granton received his transplant on June 10. Daniel Bayless said that because of the donor program’s confidentiality guidelines, all he and his wife, Jenni, would ever know of the donation was that it came from a boy born in 2000 and was stored in St. Louis.

So far, Granton is improving, his parents say. A recent blood test on him showed that 86 percent of his white cells were donor cells. This week, a test showed Granton had produced “natural killer cells,” which play a major role in fighting infections.

These are key milestones in a transplant because they indicate that the donor cells are starting to produce other cells, said John Miller, medical director of donor medical services for the National Marrow Donor Program.

Even though risks remain — the most dangerous being donor cells attacking Granton’s organs — his parents are hopeful.

Granton’s weight dropped from 16 pounds at 3 months to 12 pounds, 5 ounces at 6 months. This week he was tipping the scale at nearly 18 pounds.

A monitor clipped to one of Granton’s toes used to beep only when the infant wasn’t getting enough oxygen.

“Lately, it has been beeping because he kicks it off,” Daniel Bayless said with a broad smile.

And, beginning Friday, his parents could hold Granton as much as they want because the ventilator had been removed.

When Jenni Bayless holds her son, she said, “he melts into my arms and just loves it.”

The parents now talk about the day when they no longer will have to put on gowns and gloves to enter Granton’s room in the pediatric intensive-care unit. They talk about the day when they no longer will have to wear masks, allowing their son to see that parents can smile, too.

Meanwhile, the Baylesses have received endless support.

The blog site for Granton has gotten more than 193,000 hits since it was established in early April. More than 110 comments appeared the day that key blood results came back. Stacks of cards and letters have overwhelmed the family.

“And many of the people … we don’t even know,” Daniel Bayless said.

A cousin of Jenni Bayless did a benefit bicycle ride last month that raised about $8,000 for the family. Children in Bolivar frustrated about being too young to donate bone marrow raised $800 in a bake sale.

“It’s a wonderful town for that sort of thing,” said Mayor Charles Ealy. “If there is a real need, people really join together.”

The president of the Bolivar Area Chamber of Commerce, Roxy Hudson, said her church, Brighton Baptist Church, placed Granton on its prayer list.

“He’s on everyone’s prayer list,” she said.

Jenni Bayless’ relatives have been approached by strangers while shopping in Springfield, Mo. They notice the special T-shirts made to raise money for the Bayless family. The shirts have a picture of Granton and the words “Don’t Worry. Pray.”

Daniel Bayless has witnessed the support. He has been traveling back and forth to Bolivar to teach a summer school course.

“Every single day I am there I see at least one kid, one teacher or one stranger wearing the ‘Pray for Granton’ T-shirt.”

And he has met a lot of eager bone-marrow donors.

“People tell me, ‘I hope I get that call. I hope I can save a life.’ ”

On the Web
•To view Granton Bayless’ blog, go to http://www.grantonbayless. blogspot.com.

•To learn more about bone-marrow and umbilical-cord-blood donations and transplants, go to http://www.marrow.org.

@ Go to KansasCity. com for video of Granton with his parents.

To reach Debra Skodack, call 816-234-4738 or send e-mail to dskodack@kcstar.com.

linkback url: http://www.kansascity.com/105/story/692616.html


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