Shining a light on Rare Disease Day

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BRIDGEPORT, W.Va. (WDTV)-- Every year on the last day of February, millions recognize Rare Disease Day. For the Owens family, they are taking part in the day to raise awareness for their daughter who was born with a rare genetic disorder.

It has been five months since we last spoke to the Owens family. Since then, their 10-month-old daughter, Elaina, has been in and out of the hospital.

"From January to mid-February we spent about 75% of our time in the PICU because she had her first round with it and she conquered it. We thought everything was fine and we thought we were going to be able to go home and she was happy. Then that night she went lifeless and limp in my arms and she went back into metabolic acidosis and crisis so it can happen that fast," said Owens.

About 1 in 80,000 are born with Methylmalonic Acidemia or MMA. The Owen's are using Rare Disease Day to spread awareness.

"You show your rare by showing that you care, so you wear blue or you wear jeans," said Owens.

Elaina recently underwent surgery for a feeding tube placement. She also will eventually need an implanted port to help gain better IV access.

"You always have to keep faith and keep hope. I know for a fact that God made me for her and God made her for me and I know that he made us for each other. He knew that I was strong enough to take care of her. She can't speak up for herself yet. She can't say that she hurts or that she doesn't feel good so I am her only voice. I want a cure for my daughter. I want an answer for my daughter on why she can't have a normal life and I have hope for my daughter. I'm not going to take no for an answer," said Owens.

The family lives one day at a time, enjoying each moment together.

"We live moment to moment and day-by-day and we appreciate every single day that we get. You learn to appreciate life a lot more whenever you have a little one who has a rare disease," said Owens.

Once she turns two, the family hopes to get Elania enrolled into a program with National Institutes of Health.

The family is planning to host an elimination dinner to benefit Elaina. It will be on May 5th in the evening at Brickside Bar and Grill.

The family is also selling t-shirts for $20 and bracelets for $2. Shipping is $3. All funds go toward Elaina's medical bills and medical needs.

You can follow their journey by visiting their Facebook page: One Day at a Time, Elaina Rose (MMA)

You can also contact Fallon at 304-669-6173.

To see our previous story on Elaina, click the Related Links tab to your right.