5-year-old battles rare disease

NEWARK - Elijah Todd will turn 6 Wednesday. For most kids, it would be just another birthday, but for Elijah, it's a big deal.

"I never, ever dreamed he would make it to 6," said his mother, Tashawna Todd. "Making it to 6 is a huge milestone for him."

Elijah has infantile Batten disease, an incurable disorder which causes progressive neurological impairment, according to the Batten Disease Support and Research Association.

According to the BDSRA, children with the disease usually live between 8 and 14 years.

When Elijah was 18 months old, his parents started to notice that instead of hitting normal childhood milestones, he was starting to regress.

He was having difficulty standing and crawling and began to palm instead of finger his food.

Elijah had an MRI in April 2012, which showed degeneration of his brain matter. After a lot of genetic testing, Elijah was eventually diagnosed, which Todd said was a shock.

"We didn't know anything about it ourselves, and it is a rare disease," Todd said.

The disease is inherited when each parent has mutations on their CLN1 gene that they pass onto their child, according to the BDSRA. Through the pairing of these mutated genes, an enzyme that normally disposes of proteins and fats isn't sufficiently produced, causing a buildup of proteins and fats in cells, which impairs their function.

Todd said this is especially noticeable in the brain, where the buildup suffocates the brain cells.

As a result of this suffocation, patients develop seizures, blindness, behavior changes, dementia, loss of motor skills and the ability to walk, talk and communicate, according to the BDSRA.

Todd said she and her husband had a 25 percent chance of passing the disease onto their children. She is pregnant with another child, who is an unaffected carrier of the disease.

"It was never anything in our line of sight or anything," Todd said. "We were surprised."

Because the disease is so rare, Todd said research is at a minimum. It was difficult for the family to learn there was no cure and that they just had to accept that Elijah would pass away young.

Elijah takes a lot of medication, cannot eat anything by mouth and is in a wheelchair. He sleeps with his parents every night.

"We've been doing it for four years," Todd said. "We learned a lot medically that we never wanted to learn in our lifetime."

She also said it has placed some financial burdens on their family and somewhat changed their dynamic.

"We don't get to experience all the things with our older kids that we would like to," Todd said.

Elijah's father, Mike Todd, said the diagnosis was the beginning of a whole different life for them.

"We're just completely different people now compared to before," he said.

Although Elijah barely has any brain matter left, Tashawna Todd said Elijah still smiles all the time, makes noises and genuinely seems to know who is around him. They try to keep Elijah as healthy and comfortable as possible.

Elijah's father tousles his hair, and his mother snuggles with him and showers him with kisses.

She said they try not to grieve until they have to and enjoy every minute with Elijah.

"His spirit is stronger than his physical body," Tashawna Todd said. "He's just got a superhero spirit."

She said their journey with Batten disease has helped her realize how much more important people are in life above all else.

She said they have been lucky that the BDSRA is located in Columbus and said joining the Batten community has been a valuable resource to them as a family.

"It's shown us that in a country and a world that is full of negativity right now, and bias, that there are so many people who still cherish what another human being's worth is, regardless of their circumstances."


JOIN THE CONVERSATION

To find out more about Facebook commenting please read the
Conversation Guidelines and FAQs

Leave a Comment
More Stories