By Robert Remler
Two former Lynbrook high school sweethearts are busy this summer, but not with vacation plans.
The former Gweneth Patterson (class of 1987) and husband Jeff Berkowitz (class of 1988) now live outside Boston and are working at building a foundation in honor of their daughter, who passed away in February.
Logan Paige died five weeks after her birth, of Myotonic Dystrophy, which is a form of Muscular Dystrophy. The disease is passed genetically and includes a wide range of symptoms, ranging from muscle weakness to heart disease.
"All my life I was an extremely healthy person," Gweneth said. That she participated in varsity high school sports was not surprising, because her father, William Patterson, was athletic director at Lynbrook High School for 30 years.
But, "As it turns out," she said, "I had this muscular disease, which was never detected. The only reason I know I am affected is because I gave birth to my little girl." That Gweneth passed the disease on to Logan is not in doubt.
Myotonic Dystrophy is an autosomal disease, which means it becomes more prominent with each generation. It affects muscles and other organs in the body. Medical science has yet to provide a cure, which is what motivated the Berkowitzes to form their foundation.
Their objective is to make the name of the disease that took their daughter a part of the public vernacular. The Logan Paige Foundation was created to raise money for research, host seminars and lend support to prospective parents who cannot afford genetic testing for Muscular Dystrophy.
Two prenatal examinations that possibly can detect Myotonic Dystrophy in infants like Logan are an amniocentesis or a DNA blood test, Gweneth said The cost for a DNA test is about $250, she said.
"We realize that people can't be tested for everything," she said. "But if you are able to discover if a disease is present before a tragedy happens, a lot of broken hearts and suffering can be spared."
Not knowing that her daughter had the disease is an experience Gweneth would not want to repeat. She went into preterm labor at 28 weeks, after going for a routine appointment with her midwife. She complained of feeling "kicks" only a few times a day. Tests revealed that Gweneth was in labor with contractions 3 to 4 minutes apart, she said.
At a Boston hospital, she was put under high-risk care. Logan was not determined to have Myotonic Dystrophy until she was born, Gweneth said.
Estimates are that 1 in 8,000 people has Myotonic Dystrophy, Gweneth said. In her family alone, tests done after Logan's birth revealed that the disease has affected Gweneth's mother and four siblings.
"We were unaware of this disease until after my baby was born," Gweneth said.
Symptoms associated with Myotonic Dystrophy are similar to other but minor illnesses. "When I open a jar, my hand sticks for a couple of seconds," Gweneth said.
The trauma of losing an infant has brought the Lynbrook High School sweethearts closer, Jeff said. "We keep busy by staying pro-active. We're trying to put a face on this disease."
Additionally, they continue hoping to bring another child into their lives.
Now that they know Gweneth carries Myotonic Dystrophy, they have a new strategy for becoming parents and recommend it to others. If they choose, they can get pregnant through natural conception, but that brings a 50 / 50 chance of passing Myotonic Dystrophy to the child. Instead, the Berkowitzes recommend that couples in their position consider an egg or sperm donor, depending on which parent has the disease. A third option for conception is to consider a method known as pre-implementation, in which a doctor fertilizes 10 to 15 eggs. Embryos then have a single cell biopsy and are tested for the disease. Any embryo that is deemed normal is then a candidate to be implanted through usual in vitro procedures, Gweneth said. Lastly, couples can adopt a child.
Currently, the Berkowitzes are considering trying to conceive through pre-implementation. Meanwhile, Gweneth urges parents to "cherish every second with your baby. Don't take anything for granted."
The Berkowitzes have planned three major fundraisers for this year. They will host two golf tournaments, one in the Boston area July 30 and one on Long Island sometime in October. They have also arranged a New Year's Eve Gala in Bedford, Mass.
For more information:
Visit
www.loganpaige.org or send email to:
jeff@loganpaige.org, or
gweneth@loganpaige.org. Or go to the Myotonic & Congenital Dystrophies Support Group International Web site at:
www.geneticalliance.org
Correction
The June 28 article about Lyme Disease omitted a recommended treatment. Amoxicillin is recommended three times a day for 10 to 21 days, or Doxycycline 100 mg. two times a day for the same duration. Dr. Russell Porter, primary care physician in sports medicine, geriatric medicine and family practice, said that antibiotic treatment is especially important for young children and pregnant women. Porter said that Doxycycline should not be used for their treatment. Self-examination for Lyme Disease should be done from head to toe, said Porter. "Once in the morning before going outdoors, and again in the evening, when back indoors." Adults and children alike should be checked.
Notes and lectures
North Shore-Long Island Jewish Health System is sponsoring an anger management workshop starting July 17. The workshop will meet on six consecutive Tuesdays at 7 p.m. in Manhasset. Fees for the workshop are often partially reimbursed by insurance carriers, according to the hospital. If interested in joining the group or to obtain more information, call (516) 562-4927.
Sports Therapy and Rehabilitation Services (S.T.A.R.S.), part of the North Shore-Long Island Jewish Health System, is holding a free golf fitness clinic on Tuesday, July 17, from 6 to 8:30 p.m. The clinic will be at S.T.A.R.S. in East Meadow, 801 Merrick Road. Registration is required. For additional information or to register, call (516) 393-8858.
The Leukemia & Lymphoma Society of Long Island is sponsoring the 14th annual Kenny Raff Swim-a-Thon on Aug. 20-21. This year's event will be at The Sands of Atlantic Beach. To learn how to participate and starting times, call (516) 569-3741.
The Lupus Foundation of Long Island , in Bellmore, will hold an open forum on Saturday, July 28. The event will take place at the Hampton Library, 2478 Main St., Brideghampton from noon until 2 p.m. For more information, call (516) 783-3370.
The Arthritis Foundation of Long Island will host a free meeting, open to the public, 2 p.m. Tuesday, July 17, at the Long Beach Medical Center, 455 East Bay Drive. For more information, call foundation headquarters at (631) 427-8272.
The Nassau University Medical Center will hold free waterbirth/labor education classes 6:30-7:30 p.m. Thursday, July 26 and 10-11 a.m. Saturday, Aug. 11. Refreshments will be served. To register, call (516) 572-6820.
Winthrop-University Hospital is offering a free lecture called "Men's Health: Prostrate Problems," 6:30 p.m. Tuesday, July 17, at 101 Mineola Blvd., Mineola. Pre-registration is required. For information and to reserve your space, call (516) 663-8300.
Franklin Hospital Medical Center will host its annual invitational golf tournament on Monday, Aug. 20 at the Seawane Club in Hewlett Harbor. Tee-off time is 11 a.m., with all players enjoying brunch, a full round of golf, cocktails and an awards dinner. For information about the $375-per-player benefit, call (516) 256-6360.
The Nassau County Department of Health reminds residents to be careful when it comes to warm-weather dining and foodborne illnesses. No cooked food should ever come in contact with a cutting board or utensil that has been used to hold or prepare raw meat, fish or poultry. If a plate or cutting board is to be reused after holding raw food, it should first be thoroughly cleaned and sanitized. For more information about eating safely during the warm weather, call the health department at (516) 571-3680.
