"I wish that he didn't have to go through this so he could just live a normal baby life."
That is the thought from Allison Grinnell of Stoneham on her seven-month-old son Caden.
Caden has torticollis and plagiocephaly.
The two problems often go together.
Torticollis is a twisting of the head that, in Caden's case, is a result of a weak muscle in his neck.
Because Caden can't easily turn his head, he often lies on his back in the same position with his head turned slightly to one side. That has led to a flat spot on the left side of the back of his head - plagiocephaly.
Generally, children with both conditions start getting over the plagiocephaly when their torticollis improves - which can happen without treatment. Caden recently began physical therapy to strengthen his neck.
But, his torticollis is not going away fast enough, according Grinnell, and his plagiocephaly has recently been characterized as "severe" at Shriners Hospital for Children - Erie.
Caden does not have any brain damage from the condition, Grinnell said. Lasting deformation of the forehead, ear and eye socket are possible. In the worst case, brain damage could result.
She was told Caden needs a special helmet to help support his skull and allow it to grow normally. "The doctor at Shriners informed us that he does need it now," she said. "As the skull grows, the area that's pushed in, it grows back out."
He would have to wear the helmet about 23 hours a day for several months. A baby's skull begins to harden at about one year.
She, Caden's father Paul, and sister Hannah, had an appointment Thursday in Erie for an evaluation and possible fitting for a cranial shaping helmet.
The problem is, Grinnell's insurance provider has declined to cover the helmet - an estimated $2,200. The insurance representative explained that Caden must undergo more physical therapy before the equipment is covered.
The helmets must be adjusted every few weeks. Grinnell is not sure there will be ongoing costs associated with those adjustments beyond the travel.
To assist the family with the expenses, an account has been set up at www.giveforward.com under the name Baby Caden's Helmet Fund. Other fund-raising efforts are in the works.
"If anyone can find it in their heart to help out even the least little bit it would be greatly appreciated," Grinnell said.
The conditions have had little effect on Caden's attitude.
"Caden's rowdy," Grinnell said. "I feel so bad for him because he has the oomph to go... and he just can't go anywhere yet."
"He's a happy little baby."