Baby with rare disorder benefits from Midlands nonprofit - wistv.com - Columbia, South Carolina

Baby with rare disorder benefits from Midlands nonprofit

(Source: WIS) (Source: WIS)
COLUMBIA, SC (WIS) -

Every parent fears the unknown for their child - that’s even more true for Serena LaRoche, mother to 3-month-old Josephine.

"Just fear, not knowing what to expect. Not knowing that what I'm doing is going to be the best for her," LaRoche said. "I want the best for her."

The 3-month-old affectionately known as Josie has a rare genetic disorder called type two chondrodysplasia punctata. It's a genetic abnormality on the X chromosome that causes developmental delays, bone, skin and eye abnormalities, and other issues.

Thanks to early intervention, Josie is getting far ahead of her disabilities.

"We work with the family to develop outcomes and that is essentially what do we want to achieve from our services? What do we ultimately want the child to be able to do?" Jennifer Truesdale, an early intervention specialist with Easter Seals asked. "We help them feel empowered as well. The little ones can come in and sing songs to their sister and help her. We’re starting to see her smile and hear her cooing, and just see her develop her strength.”

RELATED: Midlands Gives: Your chance to help area nonprofits!

Easter Seals is a nonprofit that provides occupational, physical and speech therapy for children with disabilities. It's one of more than 330 non-profits participating in this year's Midlands Gives.

The nonprofit operates in a non-traditional setting – going straight to families right at home. Donations to Easter Seals for Midlands Gives on May 2nd will benefit all of its programs, including in-home support supplies for families and training for therapy staff.

All of this to lift up babies like little Josie, who is overcoming obstacles every day.

“Because of these therapies and because of these services that Easter Seals provides, I feel that Josephine is getting our best, the best of us on a daily basis."

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