Angioma Alliance

Though the setting is picture perfect, the reality is anything but that. Both boys suffer from the same neurological disorder that caused the death of track star Florence Griffith-Joyner. The fort, a seemingly innocuous gift from the Make-A-Wish Foundation for a sick boy, became the source of a heated neighborhood controversy. And the entire experience has turned the boys’ mother, Liz Neuman, into an unexpected activist for unexpected causes.

“It’s been hell. Nothing is ever normal again,” said Neuman, referring to the nightmare that started on December 31, 1999, when 2-year-old Jake awoke from his nap unable to speak.

“My husband and I rushed him to urgent care where he suffered a seizure. A CAT scan showed that deep in his brain there were two lesions that were hemorrhaging,” recalled Neuman.

Doctors in Bakersfield transferred Jake to the Children¹s Hospital in Los Angeles, where three days later an MRI revealed two abnormal enlargements of blood vessels known as cavernous angiomas.

A cavernous angioma is a tangle of malformed blood vessels that looks something like a raspberry but can range in size from microscopic to inches in diameter. The incurable, lifelong condition can cause stroke symptoms, seizures, hemorrhages, paralysis, and, depending on the severity of the hemorrhage, even death.

“I was stunned. They told us he might die from something I had never heard of,” said Neuman.

Doctors removed the lesion from the left frontal lobe of Jake¹s brain. As a result, he suffers from attention and focal difficulties. Surgeons were unable to remove a second angioma, and a subsequent MRI showed Jake had suffered another hemorrhage and two additional lesions had grown in other areas of his brain and had to be monitored. As the family was adjusting to the reality of this frightening disorder, they began to fear that 3-month-old Sam might have the same condition.

“But we were told there was very little chance he could have this disorder,” said Neuman, who noted that in 2000 many doctors didn’t realize how many cases of angiomas are genetic. After a birthmark on Sam¹s foot grew into a lump when he was learning to walk, Neuman requested an MRI that revealed Sam had seven cavernous angiomas throughout his body. In October of 2002, at the age of 3, he suffered an acute brain hemorrhage and underwent surgery.

“The harsh reality hit us. This was only the beginning,” said Neuman, who was about to get another taste of how cruel fate can be in an unlikely form - a granted wish.

In the ICU, Sam said that he wanted to go to Disneyland. The Neumans contacted the Make-A-Wish Foundation, which arranged for the family trip to Disney World and Sea World in Florida. Then, in 2003, Jake made his “wish” for a backyard fort.

“It was all my idea. I wanted a slide, a rock climbing wall and a fireman’s pole,” said Jake, now 6. Unable to buy a fort to fit Jake’s specifications, Make-A-Wish arranged to have the wood and kit delivered to the Neuman home, where John Neuman took three days leave from the Air National Guard to erect the structure.

“He worked so hard. Jake got his wish,” said Liz Neuman, shaking her head at the kitchen table as she recalled the chaos that ensued.

“We didn’t bother to check the building regulations. There were already 11 or 12 forts in the area,” she said. But a neighbor didn¹t like the fact that the Neuman’s new addition and its 10-foot platform gave occupants an unobstructed view into surrounding houses. Soon the RiverLakes Ranch Master Association declared the fort in violation of their Covenants, Codes and Regulations and ordered them to remove it.

“They tried to take down our fort,” said Jake with a frown. But John Neuman was adamant that his son’s wish not be reversed, and the Neumans opted to fight, a decision which meant attending numerous meetings and suffering emotional strain that was second only to that caused by the boys’ illnesses, said Liz Neuman.

According to Neuman, after months of waiting to get the issue resolved, a compromise was reached in mediation. If the fort could be surrounded with five 12-foot redwoods, it could stay. Las Palmas Nursery sold the Neumans redwoods for half price, and the problem seemed solved.

“Then the trees came in and they weren’t 12 feet. They were 10 or 11. I said, “That’s fine. Go ahead and plant them.’ I figured they would be OK,” said Neuman. But she was told by homeowners association members the trees wouldn’t do.

This time, the majority of the community stood behind her.

“When people started to hear about what was going on they responded with outrage. They even volunteered to go door to door with petitions and buy trees to help us,” said Neuman. Finally, city arborist Paul Graham heard about the Neuman’s plight from a neighbor and with his help and the generosity of White Forest Nursery and an anonymous doctor, redwoods that met the association’s standards were planted.

“We are pleased that the matter is resolved,” said Attorney Michael Whittington, who represents the RiverLakes Homeowners Association. “I think we were successful in accommodating the needs of the Neumans as well as the needs of the adjacent property owners.”

Just back from a neurologist convention in San Francisco where she worked at the Angioma Alliance’s exhibit, Neuman only wants to be recognized for one thing: her attempt to raise awareness about a condition that she believes affects many.

“Jack and Sam are the only children in Bakersfield we know of who have the illness, but they’re extreme, genetic cases, not the norm.” Cavernous angiomas are estimated to occur in up to 3 million people in the United States, which translates to 1 in every 100 to 200 people, but most cases occur later in life and are asymptomatic and solitary.

The disease has only been diagnosed in the past 20 years, said Connie Lee, president of Angioma Alliance, the leading advocacy organization for the condition. “The active, genetic form is rare. We’ve identified two of the three genes that can cause the condition, but we’re not sure what causes the lesions to bleed, and we’re still a long way from finding a cure,” Lee said.

The condition received some public attention after former Houston Astros manager Larry Dierker had a public seizure followed by a craniotomy, and Griffith-Joyner died following an epileptic seizure caused by an angioma.

“We’re here to offer education and support, and hook people up with research studies,” said Lee, who has come to know the Neumans well.

“The boys are great. They¹re really just kids - kids with complicated lives.”

For now, Jake and Sam get regular check-ups in L.A., are watched closely by Bimat administrators and are forbidden from contact sports but not from intense contact with one another.

“He’s my friend. My best friend,” said Jake of his brother, who, according to a MRI last month, has four new angiomas.

“Things aren’t looking good for Sam. I’m afraid he’s going to have more surgeries,” said Neuman, who tries to carry on normally but lives in constant fear.

“The other day, Sam was complaining that he couldn’t move his foot, and since weaknesses in one¹s limbs are associated with angiomas, I rushed him to the doctor. It turned out his foot had just fallen asleep.²”

Though most sufferers worsen with age, there is no clear prognosis for the boys.

“I wish I could say ‘It will be 10 years’ or ‘It will be 15 years.’ But there’s just no way to know,” Neuman said.

Their fort isn’t fully complete; a rock-climbing wall remains to be added to the structure that has changed the landscape of the Neumans’ property as well as that of the entire RiverLakes community.

“I couldn’t have made it through without support from my family, the community, neighbors and Bimat teachers and parents,” Neuman said. “It’s what keeps me sane and gives me hope.”

For more information, visit Angioma Alliance.