Jessica and Sean Hillard want to beat the monster disease that is to blame for their daughter's death.

After spending the last 18 months of her life at Children's Hospital Boston, Eithene (pronounced Ethany), 4, lost her battle with Mitochondrial Disease, a disease that affects 1 in 4,000 infants, children, teens and adults.

While the family is struggling with the loss of their daughter they have channeled their sorrow to bring awareness about the disease to the community.

"We believe our daughter's life had a purpose," said Jessica Hilliard sitting in her Attleboro home. "God had a purpose for her life to touch many people and raise awareness for Mitochondrial Disease. "Even in the midst of suffering you can see beauty in the world."

"She would talk to nurses and doctors about how God loved her," Hillard added. "She would talk about heaven. She was only four, but had a strong love for God and that’s why my family made it through."

The Hillards and members of the Energy for Eithene plan to participate in the MitoAction Energy Walk and 5K Run for Mitochondrial Disease.

The team is heading to Castle Island in South Boston Sunday, Sept. 18 to join thousands of others who will walk to raise funds to research Mito. The disease has been implicated in autism, diabetes, Alzheimer's, and Parkinson's disease.

Families such as the Hilliards want to bring awareness to the disease that is more commonly found in people than cystic fibrosis because its symptoms, which included seizures, muscle weakness, organ failure, vision and hearing loss and gastrointestinal dysfunction, is often misdiagnosed or not recognized.

A Struggle From Birth

Eithene's struggle started at birth. She was born with several birth defects or VACTREL Association. VACTREL association is when different defects are linked but have unknown gene sets causing the defects. The Hillards believed their daughters birth defects were the cause of of all of her problems, but at the age of 2 when most children with VACTREL have had surgeries to correct the birth defects or were getting better, Eithene was getting worse. 

"Instead of her problems stabilizing, her problems were progressing and adding problems to organs that didn't have birth defects," Hillard said.

By the time her daughter was 18 months old, Hillard suspected Mitochondrial Disease. "My daughter had normal cognitive function, but had a very severely affected GI (gastrointestinal) tract.  By the time she passed away she was affected in every system. Her intestine stopped working. She could not eat food by mouth, take medications into her stomach and ended up with a Total Parenteral Nutrition (TPN) to provide food to her body through her chest."

Eithene needed an intestinal transplant, but was too sick."She was suffering a lot," Hillard said of her daughter. "Part of the way the damage from the disease presented itself was through pain in her arms legs, head and GI tract."

A Difficult Diagnosis

Explaining Mitochondrial Disease to the average person is difficult and some people she said confuse it with cancer or other diseases. The disease is not easily diagnosed because the symptoms can be widespread and can affect a person's vision, ears and gastrointestinal tract, to name a few. Mito has to be suspected when organs that have problems that are not connected to each other."

"There are many different forms and they have the same end result, which keeps the Mitochondria from producing energy for the cell and the cell can't function," she explained. "It’s like running your car battery half charged."

The last four years has been a challenge for the Hillards. "It was difficult not know what was wrong with her," she said. "It was difficult when we did get a diagnosis and realized there was no treatment for it. It was difficult because her disease was severe and we knew she would die."

Battle Against Mito Continues

The struggle continues for Jessica and Shawn because their it is suspected that their 3-year-old son Gabriel also as Mitochondrial Disease. The symptoms are mild and the family is hopeful that with proper medical management he will have a good prognosis. The problem is that on the other side of that coin there has to be fear that the disease will progress quickly. The last six months have been especially difficult for the Hillards. With her husband out of work for the last two years and her daughter's death, the family has been under financial strain. So much that purchasing medication for Gabriel for the last five months was not possible. Still, Hillard remains positive. "We have a strong faith in God and strong church community that supported us every step of the way."

The eight-member MitoAction team, Team Eithene, was able to raise $2,000 last year. This year, however, they weren’t aggressive at fundraising because of their daughter's passing. It's not too late to donate, according to Hillard because donations are accepted even after the walk. 

It is important to know that Mitorchondrial Disease is not rare. It can affect children or adults in minor ways. If we don’t encourage the government to donate money for research more children will die like like Eithene did.