GROVES — Scooting around on her hands and knees 16-month-old Daphne Landry moved from one colorful toy to another.

The babe then maneuvered to her crib, carefully pulling her little body to a standing position as mom Heather watched from nearby. The series of movements, which are part of developmental steps and growth, are cause for celebration in the Landry household and show how strength, determination and faith can help beat the odds.

At the age of six months, Daphne was diagnosed with tuberous sclerosis complex, a rare genetic disorder that causes tumors to form in many different organs. She requires frequent trips for treatment at Children’s Memorial Hermann Hospital in Houston.

A benefit to help the family with medical expenses will be held at noon on Saturday, June 16 at Action Restoration, 5215 N. Twin City Hwy., Port Arthur. There will be barbecue dinners for sale, raffle tickets, a car wash, flea market, bake sale and kids activity tent.

Sporting a blue Little Mermaid shirt with white shorts and her hair pulled into a ponytail on top of her head, Daphne moved back across the floor to her mother’s waiting arms.

“She saw a neuropsychologist this week and he was amazed with how advanced she is with all the tumors going on. She’s a trooper,” Heather Landry said. “At the end of the month we will talk to the neurosurgeon and epileptologist about possible brain surgery.”

Daphne currently has tumors in her brain, eyes and heart. The tumors are causing the child to have seizures and she is currently on three different medications, which are costly.

“When she was about 6 1/2 months old she started having some weird movements and we thought, ‘well, she’s a baby and she’s learned something new,’” the mother said of seeing Daphne lie flat then curl her extremities together. “We learned she was having infantile spasm seizures.”

Heather and her husband Derrick Landry first brought the child to Texas Children’s Hospital in Houston and although the hospital was great, she said, they felt not enough was being done to fight for her child’s life. More seizures passed, some of which were more severe than usual, and with lots of prayer the family found a new treatment center at Children’s Memorial Hermann Hospital in Houston with Dr. Gretchen Von Allmen.

But hospital visits, medication and surgery are taking a toll on the one-income family. Heather was forced to quit her full-time job in January in order to care for her daughter.

“In the past two weeks we’ve spent about $3,000,” she said referring to medical scans at the hospital.”

The family does have insurance, which helps, but does not pay for all medical expenses. Two of Daphne’s seizure medications cost about $60 each, which the family must pay. The most expensive drug cost $4,000 per month but luckily the majority of that is paid for.

Then there are between two to four trips to Houston each week and three to four different types of therapy sessions during the week.

“Daphne undergoes social therapy because the chances at developing autism are one-in-two,” she said. “The therapy includes eye contact and learning how to play. There is also occupational therapy for fine motor skills and gross motor skills and speech therapy.”

Through testing the family learned the location of the tumor in Daphne’s brain and that this tumor has affected her speech.

There is no cure for TSC and Daphne’s prognosis is hard to predict, her mother said.

“They told us this week they could remove the tumors in the brain,” she said. “But the tumor could come back so they told us we should also be prepared for more seizures.”

As she spoke, Daphne stopped mid-crawl, her small limbs stiffening. Heather picked up the baby and gently rocked her telling her ‘it would be all right.’ Daphne, arms around her mothers neck, slowly lifted her head and looked around her room with eyes wide open as if she was unsure of where she was.

“Even with the meds, she still has several seizures a week,” she said.

The Landry’s have “a pretty amazing” family that has helped in way they can and the family is the ones hosting the benefit “because we are so wrapped up with her neurologically right now,” she said.

The family is also expecting a new family member — another daughter — in October. Testing has shown the baby, who will be named Hope, does not have TSC.

Later this month, the family will trek back to Houston and meet with a team of physicians and make decisions regarding the impending brain surgery.

An account has been set up for Daphne A. Landry, account number 10010000097848, routing number 313177727,  MobilOil Federal Credit Union, P.O. Box 12849, Beaumont, Texas 77726-2849.

mmeaux@panews.com