Helping Families with SMA

Miller

Getting an SMA diagnosis is a life altering moment. “When we got diagnosed, we were very lost.” Mary Oaks daughter Allaney Oaks was diagnosed with SMA type 2. ” The first people we heard of were the Woodruffs.”

Kelly Alexander’s daughter Maggie is also SMA type 2. She has a similar story. “They’ve been amazing support for us. I mean the day we got diagnosed, I actually talked to Meredith the day after.”

“We got diagnosed on a Monday, that’s the day we heard about them.” Mary Oaks explains, ” And they connected us with them on that following Tuesday. So they have been there for us from day one.”

“You know from the very beginning they said we want to be a resource for the community and we want to be able to help other families that are going through this.” Tonya Balmalkund is a Professor of Pediatric Neurology at UAMS ” Just to be able to link a family that is in that moment of ‘Oh my God I can’t believe this with someone who know what that moment feels like and to help them walk through that, it’s been really a wonderful resource. I mean you can’t equal that in any book or any blog site. “

Kelly Alexander agrees. “It was really helpful for her to call and reach out and talk to me and just let me know that it was going to be ok.”

Mary Oaks says that she can’t imagine what would have happened to her family without the The Miller McNeil Woodruff Foundation. “Without them, I don’t think that we would be able to have this much faith and hope to finding happiness in life after such a horrible diagnosis.”

“Arkansas Children’s Hospital gets us in touch with the newly diagnosed families and we’re able to support them whether it be emotionally, if they have a financial need with equipment that they might need for their child. ” The foundation has given money to families to make their home handicapped accessible and to purchase specialized equipment such as ventilators for the special needs of the children. “We’re able to support them but we are also able to connect them. We also send them to the annual SMA conference that Cure SMA puts on.” The foundation will cover all expense paid trips to the conference for families newly diagnosed with SMA allowing them to network with other families. ” And for a long weekend be somewhere where they are not in the minority and to connect with other families that are living the same day to day life that they are. “

Meredith says that the experience has helped her as much as it helps others. “Healing is definitely taken place and that has happened through our friends and our family and our network of supporters through the foundation who have been with us ever step of the way. From the diagnosis up until today. Everyday they are there with us and the healin continues but the foundation has been a huge part of that because its been able to show us that he did have purpose. He is very much a part of our every day life just as much as Cole and Mattie our 8 and 4 year olds, and the foundation is the reason for that.”

You can help children with SMA by texting  MILLER to 77948 or by clicking here.

Copyright 2020 Nexstar Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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