Chromosome 9p- News: Manning Monitor 2000

THE MANNING MONITOR

Manning, Iowa
Thursday, July 20, 2000
Vol. 118 No. 33

Front Page

EXTREMELY RARE GENETIC DISORDER BROUGHT FAMILIES FROM ALL OVER THE WORLD TOGETHER FOR A WEEKEND AT MAHONEY STATE PARK

By: Jeannea Sybesma

The stories that came out of that weekend are full of both emotion and inspiration. There was 15 year old Meghan Murphy who was trying to sell raffle tickets to support the Chromosome 9p- Network, and when asked what the money would be used for she responded, "To help my friends, of course.” Meghan’s uncle was so moved by that simple statement that he footed the bill for the airline tickets that brought Meghan and her mother, who live in Massachusetts, to this most incredible event.

Then there was the Davies family, with 1 year old Daniel, whose whole neighboring community held fundraisers for over a year to pay for their family to travel all the way from England for this moment that would change their lives. The same story is true of the family of Mitchell Eyre, whose trip was funded by their town along with help from the Lions Club, because ticket costs from Australia for the family of four are astronomical. Their fundraising took them over 2 years to accomplish this goal of sending them half way around the world.

What is the common thread that pulls them like magnets, attracting the Murphys & Davies as well as other kids and their parents, to travel from all over the globe just to spend one weekend together? The answer - a particle of material that is so small it takes specialized microscopes under lab conditions to determine it’s been deleted, but so large in it’s affect that it produces some of the most rare but yet incredible kids. These kids have characteristics that are life altering to them and their families. The genetic condition that all of the kids that gathered together that weekend have, is called Alfi’s Syndrome, or more commonly just called ‘9p-‘.

The 4th annual gathering was coordinated through The Chromosome 9P- Network. They call these events “Regionals”, because it is the heart of the 9p- group to get to as many different ‘Regions’ as possible to get as close to as many of the 9p- families as they can. The non-profit organization was started back in 1984 with a handful of families exchanging information, and over the years the number of families grew to reach its current number of 170 families worldwide.

9p- is an extremely rare anomaly, in which a very small piece off the top of one of the 9th chromosomes is missing. It has been estimated that only one out of every 4.5 million births is affected by the rarity. Parents of children diagnosed with 9P- are usually left in the dark because the medical profession knows so little. Parents are left feeling isolated, fearful and very alone. The children are born with a wide variety of physical and mental delays, and many have numerous surgeries for corrections of their cranial facial areas, heart, kidneys, palate, ears, etc., as well as years of therapies for physical and speech related issues.

The weekend was full of the sharing of information, stories, trials and tribulations, as well as laughter and tears according to Beverly Udell. Beverly, president of the 9p- Network, and her husband Jim Udell of Las Vegas, Nevada were also present at Mahoney State Park over the weekend. They not only had a very important role to carry out over the weekend by sharing information about the rare disorder, they were also there to gain support of other parents of 9p- children. Their 13-year old daughter Chelsea is also a 9p- child.

The event, located this year at Mahoney Park in Ashland NE, was held June 16-18 and was funded entirely by the generosity of various companies, groups, and individual donors from Nebraska and Iowa.

Hosting the entire event was former Manning residents Mark and Becky Siepker with the help of their family. They worked over a year to make the successful event a reality. Mark and Becky, who currently live in Omaha, had each attended one of the previous years Regionals with their son Jeff who is 17 years old and has 9p-. Mark traveled to Massachusetts in 1998 with the 9p- group, and Becky and her father brought Jeff to the Texas Regional in 1999. "They were teased that they had to host one of these 9p- family gatherings in order to finally be able to attend one together", said Beverly.

Mark and Becky gathered a whole committee of volunteers, which included many people from Omaha. Jeff who will be a senior at Millard North High School this fall, and his brothers, Andy, 19 and Bret, 14, along with Mark’s mother, Marlene Siepker, and his sister, Joni Kienast, both of Manning, had tremendous roles over the weekend long event. Also on hand for the event was Becky’s mom Lorie Bumann who came in from Schleswig.

Joni Kienast of Manning, volunteered her time to help her brother and sister-in-law with the event. She helped by preparing meals and babysitting for the parents of the 9p- children while they were in meetings with doctors and other parents. She said that the weekend was like a family reunion for her. “It was a great weekend for everybody. I had never met anyone else with 9p- and it was so rewarding for me to see other children like Jeff. I fell in love with the kids, they were all so trusting and friendly and my heart just went out to them,” Joni stated. She also said that the weekend was a success because of the planning of her brother and sister-in-law. “Mark is a real organizer and the weekend was just perfect right down to the weather,” she said.

She also commented that when they all had a chance to attend a melodrama called “Border Bandits” at Mahoney Park, the children went wild with excitement. Joni said they were encouraged to throw popcorn at the ‘bad guys’ on the stage, and not only did the children take part, but also the parents. Another fun time was had at the Wildlife Safari Zoo.

Marlene Siepker, Mark’s mother, said of the three-day event, “It was a great experience for myself and my family. All of the volunteers were so willing and anxious to make the weekend just perfect for everyone involved.”

She also commented on the day that kite flying and bubbles were on the agenda. Can you imagine all of the children flying kites? You would think it would be an accident waiting to happen. Not a chance!

“The day was just perfect. All of the children were flying kites at the same time and God made sure it was a perfect day for them. It was so touching to see all of the kites in the sky and bubbles just floating up everywhere,” Marlene spoke with heartfelt words. “It takes so little to make these kids so happy.”

In addition, she said her son and daughter-in-laws responsibility to make the weekend the ultimate experience for the 9p- children and their families were remarkable. Marlene said there had been much preparation over the last year getting ready for the event and Mark even went so far as testing numerous kites and calling the National Weather Service and High Plains Climate Center to find out their chances of getting just the right amount of wind for their kite and bubbles day. (Five to eighteen miles per hour for your knowledge.) Becky even spent the night at the park, one-year ago to the exact date of the planned weekend, to ensure their dates to reserve the park.

Marlene remarked on the last day when everyone was ready to return home, “It was really hard for most of the children to say goodbye. It was a tear-jerking day for all of us.”

Renee Halbur, along with her daughter Nicole from Manilla were also volunteers for the extraordinary weekend. Marlene mentioned that Nicole was planning to come home earlier than Sunday but after spending time with the children decided to stay the entire time. “It was a great experience for Nicole, she really took to the kids,” her grandmother said.

The Manning area was also represented by one hundred-fifty handmade cookies in the shape of an ‘N’ for none other…Nebraska, made especially for the weekend by Ann Wegner and Connie Siepker.

Thirty-five families from 19 U.S. states and from Australia, Canada, England and Scotland came to the gathering. This was the largest number of families ever to attend a 9P- gathering. For most of the families attending, this will be the first time they have seen another child with 9P-. The gathering provides a way for the 9P- families to finally meet one another, share information and develop friendships to help them cope with the many challenges that lie ahead. Beverly said that while the parents compare notes to learn more about the disorder, the kids with 9p- and their siblings were all actively engaged in crafts, kite flying, food and fun

Beverly shares “A good percentage of the kids who have 9p- could pass for brothers and sisters. They not only share a ‘look’ that is common to someone with Alfi’s Syndrome, (i.e. small nose, small low set ears, beautiful almond shaped eyes, small chin, delicate hands with long fingers, and long thin flat feet, just to name a common targets) but somehow they also seem to instinctually know they are the same. They are drawn to each other like magnets, and then stay best buddies.”

Thoughts contributed by Bob Schultz were, “One of our four sons, Daniel, has 9p- and we ‘were in the dark’ about the specific nature of his problem for 28 years. The 9p- parents and children were indeed like family. And, we just don't have words to express our thanks to the Siepkers and the volunteers for the great job they did.

Also in attendance at the Regional was Dr. Carol Crowe, a geneticist from Cleveland, Ohio. She is the Chief of the Division of Medical Genetics at the MetroHealth Medical Center in Cleveland. Dr. Crowe has been conducting research on 9P- since 1992. She attends all of the gatherings so that she can finally meet the 9P- children face to face; and help in her research which otherwise would have to be conducted solely by telephone and through the mail.

Beverly said the entire weekend was a huge achievement for the children and families dealing with 9p-. “Our goal is to get the word out about 9p-. There are so few people who know about the syndrome, and if we get the word out and educate people about the condition we will be helping the entire cause.” She also commented that through a short Omaha editorial that ran a few days after the weekend long event, they were put in touch with another 9p- family that lived right there in Omaha.

“The chances of having two children living in the same town with 9p- is astronomical. We are lucky if we have two in the same state.” She also said that the Siepkers have been in touch with and are planning to meet with the newest members of the Chromosome 9p- Network.

This story was written in conjunction with Beverly Udell, president of the Chromosome 9p- Network

To find out more about the Chromosome 9p- Network, you may visit them on their web site at www.9pminus.org or write to: Chromosome 9p- Network, C/O Beverly Udell, 393 N. Grass Valley Rd., Pine Valley, UT, 84781