Family raising funds, awareness for spina bifida

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Donovan; Hunter, 3; Monica; and Gabby Smith, 9, of Livermore will be taking part in the Spina Bifida Association of Greater New England Walk-N-Roll at Capital Park in Augusta on Saturday, Sept. 22. The one-mile family-friendly walk is aimed at raise funds for SBAGNE and spread awareness of Spina Bifida, a condition Hunter was born with. (Dee Menear/Livermore Falls Advertiser)

LIVERMORE — Hunter Smith is a bubbly, talkative and very mobile 3-year old boy. Like most boys, he loves playing with trucks, trains, rockets and mud. By all outward appearances, Hunter is a normal 3-year old. Hunter, however, was born with a permanently disabling birth defect known as spina bifida.

“We found out through an ultrasound when I was 18-weeks pregnant that he was going to be born with spina bifida. Right before he was born, it was confirmed he would be born with his spine exposed,” explained Monica Smith.

According to the Mayo Clinic, “Doctors aren’t certain what causes spina bifida. As with many other problems, it appears to result from a combination of genetic and environmental risk factors, such as a family history of neural tube defects and folate deficiency.”

The condition is a defect where the spinal column does not close completely. When he was born, Hunter’s spinal column was protruding from the base of his back, she explained.

“Within an hour, Hunter was whisked away to surgery to put his nerves into his spinal column and close the hole,” explained Hunter’s dad, Donovan Smith.

Adjustments needed to be made when Hunter came home from the hospital and the family was told to be prepared for Hunter to be wheelchair bound. There were, and continue to be, endless doctor appointments and physical therapy sessions. Undeterred, Monica spent hours on end working Hunter’s legs and stretching his muscles.

“We got the hang of it. It was an adjustment but we learned how to live with it,” said sister Gabby Smith, 9, as Hunter quickly crawled away from her to grab a toy.

Hunter is not confined to a wheelchair. In fact, he knows no bounds. He can move around with ease using a walker and special orthotic foot and ankle braces. His mom said he was recently fitted for crutches, which he will start using in physical therapy soon.

“When he gets older and outgrows his stroller, he may need a wheelchair for longer outings but we have a few years until we have to worry about that. For now, if he can get where he wants to go faster by crawling, that’s what he will do,” noted Monica.

The family is taking part in the Spina Bifida Association of Greater New England Walk-N-Roll on Saturday, Sept. 22 to raise funds and awareness for the condition. The one-mile family-friendly event begins at 9 a.m. in Capital Park, 33 Union St., Augusta. According to SBAGNE, an estimated 70,000 people are currently living with spina bifida in the United States.

The family hopes to raise $1,000 for the organization to support local community programs and services for those affected by spina bifida. To date, they have raised $725 and a number of donated gift certificates from local businesses. Monica said those gift certificates will be raffled off in the future, with proceeds also going directly to SBAGNE.

“Hunter has brought so much happiness and joy to our lives, and taught us beyond belief what strength and determination are all about. He is a true inspiration and continues to grow and make progress every day,” beamed Monica.

To donate, call the Smiths at 207-320-3058 or visit www.sbagreaterne.org.

dmenear@thefranklinjournal.com

1 COMMENT

  1. Hunter is my great nephew and I tell you he is such a trooper and is very determined in everything he does. His parents and big sister has done great in dealing with his disability and has come a long way from the time the little guy was born. He is such an outstanding loveable little man!!! We will be supporting this fund raising and if anyone wishes to contact me is welcome to. Loving shared by Aunt Sue Sapiel.

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