May 28, 2014 at 3:39 p.m.
Love for Lucas: Community rallies around Sugar Camp boy
Love for Lucas: Community rallies around Sugar Camp boy
By Kayla Thomason-
According to his mother, Lucas showed no outward signs of illness when he was born. He ate well and behaved normally for the first few months of life but midway through his first year he started showing symptoms of accommodative esotropia.
At his six-month checkup the Pitliks' pediatrician advised the couple to take Lucas to see a neurologist.
A neurologist at Marshfield Hospital diagnosed the boy with accommodative esotropia and later he was diagnosed with spastic quadriplegia cerebral palsy, microcephaly, schizencephaly, polymicrogyria and epilepsy. He has recently started having infantile spasms and is on medication for those seizures.
According to the National Institute of Neurological Disorders and Stroke (NINDS) schizencephaly is "an extremely rare developmental birth defect characterized by abnormal slits, or clefts, in the cerebral hemispheres of the brain." Polymicrogyria also affects the brain.
"That's just something in his brain, you know how the brain is supposed to look kind of lumpy, and in a certain spot of his brain it's just flat and that affects some of the ways he thinks or his muscles move," Katie Pitlik said.
With microcephaly the fontanel, or soft spot on a baby's head, fuses prematurely causing the child's head to be smaller, Pitlik said.
"He is very smart ... he just can't physically do what he wants to do," she said. "We'll show him pictures of things, like we'll show him pictures of his bottle and a picture of some food and we'll ask him if he wants the bottle or the food and he'll look at which one he wants. So he's very smart, it's just his muscles that are pretty much affected."
Lucas is working with speech and physical therapists and is improving.
He will reach for toys and he tries to feed himself.
"We're surprised at what he is doing right now compared to what he did when he was first diagnosed," his mother said.
Pitlik set up an account on www.gofundme.com to raise money for a trip to Canada so Lucas can receive further treatment. Her goal was to raise $7,000.
"I talked to another girl online that has a little boy in the same situation as Lucas and she started hers awhile ago and isn't quite to her goal yet, so we thought we'd need a couple months to get there and it took three days," she said. "It was awesome, it's unreal, it's just blowing us away."
In just three days people donated $8,345 to help little Lucas. The Pitliks plan to travel to Canada for the therapy sessions in March 2015.
The therapy Lucas will undergo is called the Masgutova method, which should help him build his core and other muscles.
"His physical therapist that he sees here through the Birth to Three program does these workshops all around the country with these doctors and she knows this woman up in Canada personally and she wanted us to go see her and we didn't think we could afford to do it so that's why we decided to do the gofundme website," Pitlik said.
The therapy will help Lucas be more mobile.
"His core is not very strong so that is what they are going to work on and then him holding his head up a little stronger, rolling. He can roll a little bit right now but probably work on doing that more so eventually we can try to work on him standing and walking on his own, which we're not sure that we'll get there," she said.
The Pitliks have left the website up because they know Lucas will need additional medical equipment as he gets older.
"We are leaving the gofundme open because as he gets older we will need to get him new equipment, like a wheelchair, possibly a handicapped-accessible van, and medical bills as always," his mother said.
With the additional donations, the Pitliks will purchase a GoTo Seat which will help Lucas sit better and improve his posture. The seat is portable so the Pitliks can take Lucas to the park where he will be able to swing on a swing set. He will also be able sit in shopping carts and in restaurants.
Pitlik said they will also purchase an Upsee so Lucas can take his first steps.
"The Upsee is like a harness that I will wear and strap to him and then our feet are strapped together so that will help him walk. While I'm walking he walks with me," she said. "We want to get him that because he can't stand or sit or anything on his own yet, so walking is totally out of the question at this point. He'll just love that."
There is no guarantee that Lucas will ever walk on his own. At this point, the doctors are not optimistic but the Pitliks are not giving up.
Mike Sixel, a friend of the Pitliks, is also helping to raise money for Lucas. He will be fighting in the King of the Cage mixed martial arts competition May 31 at the Menominee Casino in Keshena.
"They always have T-shirts with the fighters' names on it and this time they are going to put 'Love for Lucas' on it and all proceeds from those T-shirts (will go to Lucas)," Pitlik said.
To donate money for Lucas's treatment, visit www.gofundme.com/8wiu1c.
Kayla Breese may be reached at [email protected].
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