Kolton’s Story: A 5-month-old works to overcome a rare birth defect

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MADISON COUNTY, Ala. - A young Madison couple recently experienced the happiest day of their lives - the birth of their son, Kolton. However, heartbreak followed when they found out he had a rare birth defect. Now the couple is pushing through adversity to give their 5-month-old son quality care and a healthy life.

Chris and Maggie Mauffray couldn’t wait to welcome their healthy baby Kolton. “When we got our 3D and 4D pictures, you couldn’t tell anything,” explained Maggie Mauffray.

But just after Kolton was born, he was taken back for an X-ray. When the doctors returned, they had troubling news for the young couple.

“He came back and told us he had Craniosynostosis.” Said Maggie.

This rare defect impacts 1 in 2,000 newborns. Kolton’s joints between his skull had permanently  closed in the womb, constricting his brain from growth and development.

“To be honest,” said Chris, “It tore me apart.”

Then fear set in for the couple as to what this defect could mean for their new son’s life.

“We though he was going to have brain development problems,” said Maggie. “It messes with their eyesight as well.”

These concerns are realities if babies suffering from the defect are left untreated. However, Kolton went to straight to the neurosurgeon at Children’s of Alabama in Birmingham.

The couple was faced with two options: an invasive reconstruction of his skull or removal of the front bone to allow for growth. The couple went with the latter option, which would require Kolton to wear a helmet 23 hours a day, seven days a week for a year. Each helmet costs the family $2,400 that must be paid before the process to make the helmet could begin. The helmet is supposed to last a baby between three to four months.

“Once he got the helmet, we kept having to get it resized,” explained Maggie. “He outgrew it within two and a half weeks and now he needs another.”

The average baby requires one to two helmets throughout a year’s time. Kolton will need three to four during his recovery.

Yet another unexpected bit of news to the couple. This time they weren’t prepared to take on the sudden financial burden. They started a GoFundMe account to raise awareness and support to get Kolton his needed helmet. Kolton has gone weeks without a helmet needed for recovery.

“If we can raise this money, he won’t have to go through another surgery. I think that’s my biggest fear," Maggie said through tear-filled eyes.

Despite the unexpected, Kolton is healthy, growing and spreading abundant joy to those he meets.

“This happened for a reason,” told Chris holding Kolton and his wife Maggie. “Maybe it’s to make him stronger later in life or maybe to make us stronger as parents.”

For more on Kolton’s story click this link for the family’s GoFundMe account. They have also set up an account at Redstone Federal Credit Union called Kolton’s Donation Fund.