Angels needed

Desperate parents will sometimes take desperate steps for their sick child. A New Port Richey couple, at their wit's end in their efforts to give some quality of life to their very ill 4-and-half-year-old son, is one of those couples.

Kathy and Darren Raske, are planning to take their son Ethan half way around the world - to China - for stem cell treatments they believe are the boy's last and best hope for an improvement in his quality of life. They'll be going without Ethan's own stem cells. His cord blood was collected at his birth and is privately stored but he isn't allowed access to it.

Ethan's Story

Ethan has a litany of conditions from brain damage to GERD (reflux) that nobody had a clue about before he was born. Kathy's pregnancy was low risk. Both she and Darren are in their 30s. Kathy already has a healthy child from a previous marriage. Darren has one from a previous relationship. They also have a 2-year-old adopted daughter. Ethan is their child. But his problems are not genetic. That was confirmed by three separate DNA tests.

The only issue during the pregnancy was early contractions which the doctor said were not problematic. Multiple ultra sounds indicated everything was fine. One taken two weeks before the due date indicated the baby weighed 7 pounds.

Ethan went full term but two days before he was due, the doctor said he had intrauterine grown retardation and they needed to induce labor. He ended up being delivered by emergency C section. He was 19-inches long and weighed 4 pounds 15 ounces. It would later be determined that there was a small placenta which may have been a contributing factor in his developmental deficiencies.

Ethan came into this world with hypoplastic corpus collosum which means the fibers that connect the two hemispheres of the brain were underdeveloped. He also had a hypoplasitic optic nerve.

"That means his eyes are fine," says Kathy Raske "but the part of his brain that interprets what he sees is underdeveloped."

Ethan had feeding problems from the beginning. Later it was discovered he had infantile myoclonic seizures and GERD (reflux) which caused him to vomit almost everything he ate. He became "failure to thrive."

A temporary steroidal treatment for his seizures turned out to be ineffective and it left him with a severe immune deficiency which made him susceptible to infections which led to chronic lung disease. Because he has the immune deficiency he needs weekly blood transfusions and often has bad reactions to them. And there was one more blow to come.

Kathy remembers, "They gave him a cerebral palsy diagnosis but that's kind of a huge umbrella."

"It's very broad," adds Darren. "It could have minimal effect or a huge effect. To have a cerebral palsy diagnosis (in Ethan's case) you might as well not have diagnosed it at all. It doesn't help anything ."

The medical profession didn't offer much to the Raskes. It was at their insistence that Ethan was given a feeding tube that bypasses his stomach so he could get some nutrition into his system. After that he began to gain weight.

They also came up with the idea of putting Ethan on a ketogenic diet which they describe as similar to Atkins - high protein, high carb, low fat and in this case no sugar. The belief was that this would help with his seizures where the steroid had failed.

"I believe that the diet saved his life," says Kathy. "The ketogenic diet stopped the damage that was occurring to him. He probably would have given up if he continued the way he was with 50-60 seizures a day."

"They haven't figured out what the correlation is between the diet and the seizure disorders. It works. One thing you have to understand - his seizures are not like grande mal where he falls on the floor and shakes. A seizure for him is just a tick. And he was going from maybe 60 to 80 of those a day when we started. Two weeks into the diet he had one every other day"

In exploring alternative therapies the Raskes decided to see if hyperbaric treatments would help. They did but in the end, Ethan didn't fit into the proper categories to continue receiving them so the Raskes found a holistic doctor that gave them a prescription to buy their own home hyperbaric chamber.

The struggle

"The first year and a half of his life was horrible. It was like a blur," remembers Kathy. "We didn't eat right, we didn't sleep right. Our other children were basically on their own. My parents would help a little bit because they live close by but our older kids were pretty much on their own. But they would even help."

Darren recalls "We tried to squeak by with trying to hold down a job and work. Trying to sleep an hour, hour and a half at a time two or three times a night. It made it difficult not getting any answers, It grated for so long."

The Raskes say sometimes friends or acquaintances would ask them why they persisted. They asked why not send him away somewhere?

"Darren always says - he's our child. How can we not do what we're doing?" says Kathy. "We hit roads where we felt defeated. But you look at that little boy's face. And he's the sweetest... He's like an angel. He brings us so much joy though he can't communicate really and he's sick and he's a lot of work. It's a lot on our family. It's a lot on our other children but he brings us so much joy, just to look in his eyes."

Nor have they chosen to try and point fingers at the many doctors and hospitals they've dealt with.

"We have had people say to us you can sue the doctor who delivered him, the hospital that didn't catch the seizures at first," Kathy explains. "What we think is - this is what he's been given in life - this is what our family has been given and we want to deal with it in a way that's not confrontational."

Darren also believes lawsuits won't bring Ethan what he needs. " That kind of thing puts the focus on money. Pay me because my son is sick. Let's keep the focus on Ethan. Let's raise some money to help him advance in life."

The drive to improve Ethan's quality of life led them to stem cell treatments.

Cord blood request denied

When none of the treatments made a substantive difference in Ethan's quality of life, the Raskes started looking into stem cell therapies, knowing they'd had his cord blood saved at a Cryo-cell blood bank in Odessa.

They were stunned to find out that Ethan couldn't have it.

"The FDA has regulations on what you can use stem cells for in the United States," Kathy found out. "They actually sent us a written list of what they are allowed to release the stem cells for."

According to the Raskes there are no provisions in the regulations for complex cases like Ethan's even though it's possible that his CP and/or his optic nerve problem and/or his immune deficiency might be helped by stem cell therapy.

But the Raskes tried anyway. They submitted his medical files to researchers at Duke University conducting a clinical trial using stem cell on CP children.

"He made it down to the last 2 percent of applicants but then was removed from consideration because as part of their clinical trial they're looking for a specific control group and Ethan had several other problems aside what their 'cerebral palsy' control group had. So if it did not work on Ethan then it would be negative numbers on their tallies."

Despite the dead ends, the Raskes kept trying but there's limited stem cell research going on and trials usually target one condition. Ethan came with too much baggage. On the other side of the coin, no one would or could try to treat any of Ethan's conditions separately.

The situation is hard to accept.

"They're my stem cells," says Kathy. "They came from me and Ethan's body but it doesn't matter. So we can't get our own stem cells. It's his own body. It's an automatic match. We've tried many different avenues."

The Raskes started looking abroad and found the Chinese.

And they aren't alone. The road to Chinese stem cell research hospitals is crowded with American parents like the Raskes.

"They (the Chinese) are cutting edge with this and they've actually built hospitals just for stem cell research. It's really amazing," says Kathy Raske.

The Raskes know there are no guarantees. And though they don't want to have to go all the way to China, they believe Ethan's best chance lies there with or without Ethan's stem cells.

"There are specific doctors that study each diagnosis. Optic nerve hypoplasia - there are doctors that just study that. And the same with CP," explains Kathy.

Reaching out

Ethan's treatments would mean a four to six week stay in China. There could be anywhere from four to eight treatments at a cost ranging from $20,000 to $30,000, plus expenses. The Raskes have nowhere near those kind of resources.

During one of Ethan's visits to the Lighthouse for the Blind, Kathy was encouraged to try to raise the money. She was directed to Valerie Ciaccio, a member of the Women's Advisory Council of Brooksville Regional and Patient Educator at Stolte Eye Center in Spring Hill. With Dr. Keith Stolte's support, Ciaccio threw two very successful fundraisers for the Little Lighthouse which serves low vision and blind children free of charge.

"I brought her out into the community," says Ciaccio. "We have all these community groups that I think she should reach out to like the Kiwanis Club, the Rotary Club, the Community Resource Council." Through Ciaccio's efforts, Kathy got a chance to introduce herself to some of these groups and, says Ciaccio, " A couple of people came up to her and gave her some leads."

"We're going to do everything from events to putting boxes in businesses - whatever it takes" says Darren.

The Raskes are setting up a trust fund for Ethan. And they are building a Web site to tell his story.

For now, Ethan is holding on.

"He's the most stable he's been in his life right now. Thank God. We would not have been able to take him to China last year at this time," says Kathy. But time is their enemy.

"There is only so much that a body can take. Right now his liver is suffering. His numbers are high. Like borderline - they're worried. Every time we get a test, they're worried."

A mother's will to save her child and a father's love and quiet determination to do the best for his son are the best weapons Ethan has to fight with.

"Our mission is to give Ethan the best chance for a better quality of life," Darren says. " We want it to be as good as it can be for him which we don't believe he has right now. We think - we believe that there's better. And if it takes us six months, a year, two years, whatever it takes to get us in there. That's what we'll do."

The Raskes' Web site for Ethan is still under construction at www.ethansangels.com, but will be completely up and running within the next two weeks.

By then there will also be a trust account set up for him. For more information, call Kathy Raske at 727-534-4431.