Community Rallies Around Twins
by Laura Nachman
Haverford Press
September 3, 2003
| Like most 4 ˝ year old boys,
twinbrothers Michael and Andrew McCaughey, of Havertown love to play with their “Matchbox” cars, dig in their sandbox, and go swimming. Unlike most children, every night, Michael hooked upto a pump that injects medication intravenously over a 10 – 12 hour period. Andrew is expected to begin the same procedure in the near future. Both get blood tests every week and blood transfusions every two to three weeks. Michael and Andrew have Diamond Blackfan Anemia, a rare disease that strikes only 500 people in the world. The McCaugheys are the only fraternal twinsin the world that have DBA. Their mother, Donna McCaughey said,“DBA is a bone marrow failure disease in which the bone marrow does not produce red blood cells. Because the bone marrow fails to produce red blood cells that transport oxygen throughout the body, the lack of nourishment results in the decrease of life-sustaining functions and the eventual deterioration of the major body organs. Eventually, the heart goes into failure from overwork trying to pump blood fast enough around the body to compensate for the low hemoglobin levels. Along with this there are other complications such as: microcephaly(small head size), V.S.D.'s (holes in the heart) which little Andrew had openheart surgery for at 18 months of age, short stature, developmental delays,hormonal problems and eating and sensory issues, etc. The twins attend the Elwyn Developmental Center where they receive speech, occupational,and physical therapies and special education. All of this is necessary to help them function on as close to a normal level as is possible. Though they are almost five-years-old, they will not be ready for Kindergarten for several years because of their developmental delays. Donna said that the twins don’t know that there is anything different about them. “They are best friends with each other and their older brother Jimmy. This is all they know.” She continued, “From the beginning, their lives have been complicated with surgical procedures to correct some of the problems. Some of which are open-heart surgery, genital surgeries, numerous cat scans, M.R.I.'s, bonemarrow biopsies, etc. The scariest part of this situation is that children with this disease are in the two-percent risk category for developing Leukemia or brain tumors. That's 1 in 50 vs. 1 in 10,000 for normal children. It is a huge burden living every day worrying if our children will develop one of these terrible diseases.” Diamond Blackfan Anemia children are only expected to live into their early thirties (if they are not stricken by Leukemia or brain tumors). So we will likely be alive to mourn their passing unless we can cure them.” Donna and her husband James are sponsoring an American Red Cross Blood Drive on Saturday, September 13 from 8 a.m. – 2 p.m. at the Haverford Middle School, Gym D. “There have been a few times that blood wasn’t readily available for my sons. We want to have this blood drive because it is so important to keep up the bloodsupply,” McCaughey said. To make an appointment for the blood drive, call 610-658-5877. Or to make a contribution, checks may besent to: The Michael andAndrew McCaughey Dreams of Hope Fund The Bryn Mawr Trust Company Attention: Gail Slandreau 10 South Bryn Mawr Ave. Bryn Mawr, PA 19010 Also that evening, there will be an outdoor family movie night at the Little League field on Karakung Drive in Havertown to raise funds for the McCaughey twins. For information, contact Commissioner George Twardy at 610-649-0770. |