JOHNSON CREEK That Jackson Piskula is alive today already is a miracle. But keeping him here and healthy is going to take a lot of work and support.

Jackson, 8 months old, of Johnson Creek, has been diagnosed with a rare genetic disorder called Oral Facial Digital Syndrome, which kills almost all of the boys who are born with it.

In fact, Jackson initially was a twin, but his sibling, likely a brother, died in the womb at just 16 weeks gestation, probably because of this disorder.

Nicole Piskula said that when Jackson was born, he seemed like a perfectly healthy baby. She and husband Randy were ecstatic and so happy to add this little guy to their growing family, which includes Jacksons 5-year-old brother Noah, who lives with them, and stepbrother Robert, 9, who joins the family on weekends.

However, it soon became apparent that something wasnt right with little Jackson.

His parents noticed that Jacksons eyes were misaligned most of the time, which was different from what theyd experienced with their older children.

Jackson initially was diagnosed with Sixth Nerve Palsy and required surgery.

When doctors did a brain scan, they found he had a defective pituitary gland, leading to a condition called Hypopituitarism. Right now, the gland is functioning fine, but as he grows, it will have trouble, and even with lifelong hormone therapies, it is not expected to be able to function normally.

Jackson also has a hole in his heart. A lot of people have this condition and are able to function just fine, but with all of Jacksons other challenges, its just another troubling factor.

Were just taking it one day at a time, Nicole said.

In addition, doctors found Jackson had a couple of tumors, which are common with his main diagnosis. Ones on his tongue and is not causing much trouble, but the other, in his brain, could be life-threatening.

The tumor, located on the hypothalamus, is connected to the pituitary stem and is inoperable. Jackson is expected to undergo laser treatments his whole life to shrink it. The treatment is harsh and causes multiple and other undesirable effects, but is necessary to save his life.

This little guy has had one successful operation, with many more in his future, Nicole said.

Meanwhile, Jackson is experiencing seizures and is under heavy medication to try to get those under control.

When the Daily Union talked with Nicole on Wednesday, the family had just returned from a several-day stay at Childrens Hospital of Wisconsin in the Milwaukee area.

We thought we had the seizures under control, but I had to take him into the ER a couple of times in the last week. There was one time he stopped breathing and was unresponsive, Nicole said.

On Friday, Jackson was admitted to Childrens Hospital of Wisconsin, where a team of specialists has been overseeing his case.

This disorder is usually lethal to males, Nicole said. Our doctors are searching worldwide to see if there is any case we can base his treatment on for a better outcome.

With intensive treatment and high doses of medication, doctors were able to stabilize Jackson and bring him back to normal.

As of Wednesday, he had not suffered a seizure since Sunday, Nicole said.

Hes on two medications, pretty high doses, but he is back to himself, she said. Hes tired, but hes back home and doing pretty well.

The Piskula family has lived in Johnson Creek for the past year-and-a-half and Nicole said they have found the little Crossroads community to be very warm and welcoming.

Due to Jacksons medical problems, Nicole is focusing all her energy on being a stay-at-home mom right now, while her husband, Randy, works long hours at the Tools Inc. machining business in Sussex.

Nicole also is expecting their daughter, Charlotte, is due to be born in two months and she is doing everything she can to stay healthy for the entire family.

As one can imagine, the Piskulas medical bills are pretty high.

Insane, is what Nicole calls them. Family and friends have started a Go Fund Me page to raise money for Jacksons care. Recently, her cousin, Jenny Meinders, joined with Kades Klassic President Jill Donnelly to set up a fundraiser that will take place this Sunday afternoon at the Johnson Creek Community Center, located at 417 Union St. in Johnson Creek.

Donnelly, who runs the Kades Klassic nonprofit based in Elkhorn, said that her organization usually puts on a golf outing once a year for a deserving family.

When she heard about Jackson, his situation didnt quite fit the bill for what Kades Klassic usually does, but it was urgent and she wanted to help on an individual basis.

So she worked with Meinders to help coordinate Sundays fundraiser.

Donnelly is coordinating the silent auction and raffle, while Meinders is pulling together a spaghetti dinner.

The event will run from noon to 4 p.m. Sunday, with all-you-can eat dinners going for $10 for adults or $5 for children age 12 and under.

We (Kades Klassic) have all the stuff to put on a raffle and silent auction, so there was no need for anyone to go out and buy something, Donnelly said.

In the meantime, supporters have donated tons of food and other materials for the spaghetti dinner, meaning the costs of putting on the event will be less, and there will be more proceeds.

All proceeds will go directly to the Piskula family to offset Jacksons medical costs, Donnelly said.

Meinders said that all of the community support coordinators already have seen has been great. Nicole said their neighbors and community members have been really wonderful, as well.

People around town know us, and I get a lot of comments on the little helmet that Jackson wears, Nicole said.

The best thing about this whole thing is all of the people who have reached out to us to express their support or to help in whatever way they can, the mom said. Whether its locally or online, Ive heard from a lot of people. They share their own stories. Theyre praying for Jackson in church ...

Nicole had special praise for the local emergency medical technicians, who have gotten to know Jackson through his trials, coming out to assist a couple of times just in the past week.

The Johnson Creek EMT team is awesome, Nicole said. They brought equipment just his size. They knew just what to do, and they worked with me and accommodated our familys needs.

Meanwhile, coordinators said they hope to see a lot of people come out to the Johnson Creek Community Center Sunday to support the Piskula family and raise money for Jacksons care.

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Fundraiser Sunday to benefit Creek infant - Daily Union

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