Source: eastdubuqueregister
Ava Gilbert is just two and a half years old, but has already experienced more than her share of medical interventions.
Born with a heart murmur, Ava spent the first few days of her life surrounded by specialists. For the most part, her heart problems disappeared, say her parents Ryan and Melissa Gilbert of East Dubuque. But months later, the Gilberts realized Ava was not hitting milestones as their older daughter, Alexis, had. Doctors agreed that something was amiss and more testing revealed that Ava’s delays fit under the catch-all term cerebral palsy. In addition to problems sitting and walking and a speech delay, Ava also has a complicated seizure disorder.
The Gilberts are determined that their little girl will have as normal a life as they can salvage for her. And who could blame them.
Ava is a delight to see and talk with. Bright eyes, a ready smile and a willingness to communicate are Ava’s allies as she struggles to stand and answer questions posed by family and strangers.
Physical therapy twice a week and speech therapy weekly are the routine for Ava. In addition, every few months, she travels to Madison, Wis., for an innovative therapy. Botox, generally thought of as an anti-aging treatment for reducing skin wrinkles, is injected in her hamstring and calf muscles in hopes of decreasing muscle spasticity. Ava has about 15 injections each visit. “She is given a pain killer that makes her very sleepy, so she doesn’t know that she is having injections,” said Ryan, who works with his father in construction. “The whole thing takes about 10 minutes.” Unfortunately, success has been very limited. “Doctors have not seen any significant improvement in her condition.”
So, the Gilberts are trying another option. “I heard about stem cell therapy when a friend sent me an article about it,” said Melissa, an employee of Prudential, in Dubuque. ” I talked to a doctor at Duke University, but we didn’t have Ava’s umbilical cord blood. Other options were talked about, but none that that I felt comfortable with. I talked to another lady who took her son to China for injections of another baby’s umbilical cord stem cells and she mentioned a place in Germany that does stem cell therapy -that’s using a person’s bone marrow as a source for the stem cells, which are re-injected back into the same person. I looked for a way to do the therapy here in the U.S., but it is not allowed…”
Melissa used the Internet to research the XCell-Center, located in Germany. Impressed with the sites claims that almost 70 percent of cerebral palsy patients treated with stem cells at the XCell-Center show improvement, the Gilberts made the decision to have Ava evaluated. That initial evaluation lead the German doctors to believe Ava is a good candidate for the treatment. Treatment is set for mid-May.
“We are not looking for a cure,” said Melissa, “there is no cure for cerebral palsy. But her cerebral palsy is so mild, Ryan and I would not be able to face her if, when she is older, she asks why we did not at least try to help her…”
“We are not so much hoping the therapy will help with her physical and speech delays as we are hoping the treatment will reduce the severity of her seizures,” Melissa said. “She has had five and they lasted about two hours each time. That is so scarry… That’s our main hope, that we can reduce her seizures…”
The treatment will cost about $13,000, says Ryan, and the family will face travel and lodging expenses for about a week, none of which will be covered by insurance.
To help with ongoing medical expenses as well as well as the stem cell procedure, friends and family are holding a benefit, Ava’s Auction, Saturday, April 24, from 3 to 9 p.m., at D’s Place, Highway 20, East Dubuque. Dinner for the event is $6 per person. A live auction, 50-50 drawings and a raffle featuring a $2,500 travel voucher from Travel Headquarters and a 42-inch flat screen TV with remote start with installation will highlight the benefit.
Donations may be mailed to Dubuque Bank and Trust, Benefit for Ava Gilbert, 1398 Central Ave., Dubuque, Iowa 52001. Raffle tickets are available at D’s Place, Hwy 20, East Dubuque.
