The hard, hard fight for a better life

This four-part series follows the Luke and Zach Branson, twins from North Aurora, through their daily life dealing with the effects of cerebral palsy and the myriad, often experimental, treatments and surgeries they've undergone. Part IV

Pain and turmoil cast a gray cloud over the Branson home in North Aurora.

It is chaos - the twins are upset and in pain. Noticeable physical advancements from therapy have disappeared.

September and October 2003 are frustrating and chaotic, as the parents tend to two little boys in pain, immobilized in awkward and bulky casts.

Five-year-old twins Luke and Zachary Branson have spastic cerebral palsy and are recovering from major hip and tendon surgeries done in an effort to improve their condition.

Still continuing hyperbaric oxygen therapy treatments, gains from treatments like sleeping the whole night through and reduced tightness in their limbs usually last about six weeks. But after their surgeries, the twins regress, vomiting and waking 10 to 12 times a night.

Yet even that is minor compared with the "pure hell" of having the twins in body casts while they heal from leg and hip surgeries. Luke battles a yeast infection the first week from being on strong antibiotics.

"I was constantly cleaning, retaping and pulling out urine-soaked cotton and replacing it with new," says mother Kerri. They are immobilized from the chest down, the casts keeping their bodies stiff and rigid. Even though the fiberglass casts are lighter than plaster casts, they seem heavy because lifting them is so awkward. This adds to the hernia problems Kerri already has as well as father Scott's back pains.

Zach would have his cast off three weeks after surgery, but Luke would have an additional six weeks to go because of his more extensive and invasive surgery to stop his hips from dislocating.

A step closer

Three weeks after his August 2003 surgery, Zach, along with Luke and Kerri, head off to Dr. Samar Jaglan's office in Des Plaines to have Zach's cast removed.

Before the visit, Kerri and Scott were told the boys would be sore when the casts came off. The twins will need a lot of therapy to work on their leg muscles, which they haven't been able to use in weeks.

After an X-ray is taken to check for proper healing, Zach is given the OK, then laid down on a bed. Using a cast cutter, which looks like a portable blender, Jaglan starts cutting down each side of the mold, one side at a time, vibrating the child within. It buzzes and crunches the seal of the fiberglass cast. The vibrations, perhaps tickling Zach, have him giggling throughout the whole procedure.

Kerri is at his side, holding his hand and giving him kisses. Like a lid, the cut part of the cast is removed along with the padding layers under its surface. Dry and scaly-looking skin is revealed. It still has its tan from Florida.

Once out of the cast, Zach, and later Luke, will have many different orthoses, or splints, for their legs and feet to maintain proper alignment. But the rigid, plastic splints tend to be uncomfortable when worn for long periods of time.

Walking splints bring the foot flat to the ground so they can step appropriately. They will also have night splits for sleeping in a correct position.

Kerri and Scott see the difference right away.

Zach's legs are totally straight and not scissoring. With them outstretched, he's now a half-inch taller. The therapists have an easier time working with the boys as their legs are easier to stretch out and they can now teach them patterns of walking and standing, something that comes naturally to those without disabilities.

"We take that for granted," Scott says. "They don't know what that's like."

Luke's turn

Six weeks after surgery, in September 2003, Luke and Kerri head to the doctor's office with hopes of him getting his cast off before the twins' birthday.

Kerri doesn't think it's going to happen as he is still in a great amount of pain and won't put any weight on his legs. An X-ray confirms the bone on one side has not knitted together enough to allow the cast to come off. Disappointed, but not surprised, she is told to come back in two weeks.

For the next trip to the doctor in October, Kerri is anticipating that Luke will have a hard time dealing with the pain.

The beginning is positive, Luke laughing through the cast-cutting process, but it turns traumatic when the underlayers and bandages start to be removed and he is lifted from the bottom half of the cast. Luke screams out in pain and tears stream down his face. His breaths come in gasps, his sobbing is uncontrollable.

Kerri remains calm in the commotion, trying to comfort Luke. She holds his hand, kisses him and talks softly. His pain is unbearable. Kerri is afraid he may have a seizure, so she gives him doctor-prescribed Valium to keep him calm. Luke is laid down in his wheelchair, sobbing. Within minutes he slips into a short slumber.

A year of progress

Luke's progression is slow and painful, while Zach is healing fast and getting stronger, making it a bittersweet situation for their parents.

Their doctor thinks a combination of the pain, tendency to easily vomit and traces of anesthesia in his system are making it hard for Luke to get better.

Kerri and Scott have anticipated these problems, due to both boys being unable to work on their lower extremities much during therapy sessions.

Kerri is hoping the hyperbaric oxygen therapy treatments will speed the healing process of Luke's bone osteotomy - the gap between the bones in his left leg still needing to heal together so he can support his weight without pain.

By early November 2003, three months after surgery, it's time for the next set of hyperbaric oxygen therapy treatments. Kerri and Scott are looking forward to the trip as they realize just how much the boys have physically regressed because of the stress from surgeries, especially Luke.

Kerri sees noticeable improvements in Zach's condition, and talks about how she has Zach walk back to the car after treatments wearing his lower leg splints while using his walker.

Kerri and Scott are ecstatic about Zach's progress, but still anxious and worried about Luke. Kerri starts to wonder again if they made the wrong decision to do his hip surgery.

"It took us a year to decide on this surgery, and so far, the results have been worth it for Zach. It's too early to tell for Luke," says Kerri. Luke's recovery is slow and his legs are healing asymmetrically. "The doctor assures us this is normal, but we still worry," she says.

Until the metal plates in his hips are removed a year later, Luke's progress will be touch and go, as he is supersensitive to the foreign metal in his body.

Sometimes he can stand during therapy for 10 to 15 minutes - until he cannot take the pressure anymore and screams out in pain.

Any doubts about Zachary's surgery, though, would be erased during the last days of this round of hyperbaric oxygen therapy.

A milestone reached

Throughout the therapy treatments, Kerri sees Zach is getting stronger from the exercise of "walking" to the car. He is starting to learn how to move and control his legs.

After a treatment in the final days of their trip, Kerri decides to see what Zach will do without having his splints on while using his walker.

In the dimly lit room with the hyperbaric chambers in the background, Zachary takes his first steps, all on his own.

With just a little bit of encouragement, "he just took off," Kerri says. She was in disbelief, choked up seeing the event six years in the making.

"Thank you, God, thank you for this miracle," she recalls saying, before grabbing the video camera.

Scott, not being able to witness the event in person, gets an e-mail while at work titled, "The miracle you've been waiting for."

A video attachment shows a little boy, pushing himself forward in small bursts, taking his walker around the room in a circular path.

Scott plays the video over and over again, getting a lump in his throat. He then calls in friends from work to show them the footage.

"It was pretty amazing," Scott says.

The twins advance

In the months since that moment, Zachary is still progressing.

Zach is happier, excited and nervous, Scott says. "He looks down a lot on his legs while standing, wondering what is going on," says Scott.

With encouragement, he will use his prone walker, making a circle between the kitchen, living room and family room. The seat is tiltable and his hands are placed into Velcro wrist wraps attached to the front handle bars. He still prefers to walk without his rigid plastic splints.

Kerri uses all types of encouragement and makes it into a fun game. "Don't you get me Zach, don't you do it!" she says, which gets him giggling. Little brother Sam yells, "Go Zach!" while running to and fro trying to prompt a chase.

Sometimes Zach takes only one step, while other times he takes two or three, his little toes dragging while he pulls his foot forward.

Luke's bones have healed and he is now able to stand with his full weight on them. Part of his therapy was spent in a "stander," which provides weight-bearing support while being in an upright position. The "stander" helped him learn how to stand and carry his own weight. With the help of someone supporting him and pushing his legs forward, Luke is walking as well.

In the fall of 2004, both boys graduated to a specialized walker that allows them to stand upright while supported and hands-free as they learn how to walk. The twins have to share it, though, because of a steep price tag of nearly $8,000.

They even have a specially adapted bicycle.

Scott and Kerri attribute the twins' progress to years of continuous hard work in all types of therapy, saying the hyperbarics didn't have this effect on them overnight.

"This took two years of really hard work," Kerri says. "Little baby steps is what we aim for, the little things that gradually build and have an outcome like them walking," Scott says.

The Bransons are not sure just how much more the twins will advance, saying it's hard to comprehend just how far they have come. As long as they keep seeing development, they will continue with hyperbaric oxygen therapy treatments.

A development they have seen this summer is Luke's growing vocabulary. While out to dinner one night, Luke kept smacking Kerri on the arm and saying "Mo" when he wanted more of a biscuit.

Doctors can't tell them if they will advance because they don't know. "No one does," says Kerri.

The boys, who turned 8 this fall, will be going through growth spurts through age 12, so Scott and Kerri are curious about what will happen. What they do hope for is that the boys will be able to communicate in a way anyone could understand, perhaps with the aid of an electronic communication device.

Epilogue

Since their journey began eight years ago with Luke and Zachary, Kerri and Scott have learned many things, about themselves and life in general.

One is getting used to other's reactions to their life with disabled children.

People tend to be uncomfortable because they don't understand or know how to approach the situation. Many say "I don't know how you do it" or "I could never deal with that."

"We don't have a choice," Kerri says. "There really isn't unless (we) give up."

Their situation has also strengthened their faith. "Given the opportunity to take care of boys like this ... God has put us in charge of two fragile souls like this," Kerri says.

The most important thing they say they have learned is that life is a precious gift.

"Life is very fragile and (one should) live it to the fullest. Like there's not going to be a tomorrow because any day we could lose our boys," says Kerri.

They are not sure what the boys' life expectancies are, as it depends on different variables. For instance, seizures degenerate the body with each episode and seizure medications are hard on the liver. They could even lose them to a severe seizure.

The life span for children with Luke and Zach's characteristics ranges between the 20s and 30s, but it is not something that can be pinpointed.

"More than likely, Scott and I will have to bury our first two children," Kerri says.

Lastly, Kerri doesn't want people to be afraid to talk to someone who is disabled or has a disabled child.

"I want them to know it's fine to ask questions. It's OK to let your child come up to mine and let them stare." she says. "They are just being innocent and curious. They are just waiting for someone to tell them why Luke and Zach are the way they are and that they are OK."

"Next time you see your child staring at someone in a wheelchair, tell them 'Hi' and ask what their name is. The conversation will flow from there."

GRAPHIC/PHOTO: Laura Stoecker

Staff photojournalist Laura Stoecker has been with the Daily Herald for almost seven years. Her interest in photography began in high school when her father bought her a camera for a trip to Austria with a friend. Knowing she wanted a career in photography but not sure what area, Laura took a class in photojournalism and quickly realized it would be her career path. She went on to get her bachelor's in fine arts from Columbia College.

Laura met the Branson family in April of 2003 at a fundraiser for Luke and Zach and has been documenting their life ever since for this project.

Apart from photojournalism, Laura enjoys photographing nature and wildlife. In her spare time she enjoys gardening and rehabbing her century-old home in Kane County with her husband, John.