AS SOON AS my son Gary was born in 1958, I sensed that something was wrong. However, it took ten months for the doctors to diagnose his condition and five more years before London specialists confirmed it. How sad I was when my daughter Louise, born nine years after Gary, showed symptoms far more serious than his.
“Both of your children have LMBB syndrome,* and you will have to live with it,” the doctors quietly told me. At that time, very little was known about this rare genetic disorder. Typical features include visual impairment leading to blindness, obesity, extra fingers and/or toes, developmental delay, coordination problems, diabetes mellitus, osteoarthritis, and kidney abnormalities. Therefore, caring for my children would be quite a challenge. A recent study estimated that 1 in 125,000 people in Britain suffers from this syndrome, though many more may have a mild form of it.
JEHOVAH BECOMES OUR “SECURE HEIGHT”
I spoke to one of Jehovah’s Witnesses soon after I got married, and I immediately recognized the ring of truth. But my husband was not interested at all. Because of his job, we were constantly moving, so I was unable to associate with a congregation. Nevertheless, I continued to read the Bible and to pray to Jehovah. How comforting it was to read that “Jehovah will become a secure height for anyone crushed, a secure height in times of distress” and that he “will certainly not leave those looking for [him]”!—Ps. 9:9, 10.
Gary had limited vision, so at the age of six, he was sent for specialized education at a boarding school on the south coast of England. He regularly called me regarding matters that worried him, and over the phone I was able to help him understand basic Bible principles. A few years after Louise was born, I became ill myself, with multiple sclerosis and fibromyalgia. Gary returned home from boarding school when he was 16. However, his sight was deteriorating, and he was registered as blind in 1975. In 1977 my husband left us.
Soon after Gary’s return, we became involved in the activities of a loving congregation, and I was baptized in 1974. I was so grateful when an elder helped Gary cope with the physical changes he was experiencing during his teenage years. Other Witnesses assisted me with home chores, and eventually, local social services appointed five of them as our official home caregivers. What a blessing this has been!
Gary continued to make fine progress in the truth and was baptized in 1982. He had his heart set on auxiliary pioneering. Therefore, I decided to accompany him in that work and continued to do so for a number of years. My son was very happy when, some time later, our circuit overseer asked him, “Why don’t you become a regular pioneer, Gary?” That was just the encouragement Gary needed, and in 1990 he was appointed.
Gary has had two hip replacements, the first in 1999 and the second in 2008, but Louise’s health problems were much more serious. She was born totally blind, and when I saw an extra toe on one of her feet, I realized that she too had LMBB syndrome. Examinations soon revealed serious defects in many of her internal organs as well. Over the years, she has had major surgeries, including five operations on her kidneys. Like Gary, she has diabetes.
Alert to the difficulties that can arise when surgery is needed, Louise talks to the surgeons, the anesthesiologists, and the management team beforehand to explain her decisions regarding nonblood medical procedures. As a result, she enjoys a good rapport with all who care so well for her physical problems.
LIVING MEANINGFUL LIVES
Our home is a hub of activity, all centered on the worship of Jehovah. Before modern electronic aids became available, I used to spend many hours reading to Gary and Louise. Now CDs, DVDs, and recordings from www.jw.org enable all of us to enjoy the weekly schedule of Bible study at different times, and we can have a meaningful share in commenting at Christian meetings.
Gary’s answers are sometimes memorized, and if he has a talk in the Theocratic Ministry School, he is able to deliver it extemporaneously. He was appointed a ministerial servant in 1995 and is always busy at the Kingdom Hall, welcoming members of the congregation and assisting with the sound system.
Fellow Witnesses accompany Gary in the ministry, often pushing the wheelchair he uses because of his arthritis. One Witness has helped him conduct a Bible study with an interested person. Gary has also encouraged a Christian who was inactive for 25 years. Both individuals now attend Christian meetings.
At the age of nine, Louise learned how to knit from her grandmother, and one of the caregivers and I taught her embroidery. Because she continues to enjoy needlework so much, she knits colorful blankets for babies as well as for older members of the congregation. She also makes greeting cards, using small adhesive pictures. The cards are treasured by those who receive them. In her early teens, Louise learned touch-typing. Now, with the aid of a special talking computer, she regularly contacts friends by e-mail. Louise was baptized when she was 17 years old. During special preaching campaigns, we enjoy auxiliary pioneering together. Like Gary, Louise memorizes scriptures to express faith in God’s promises of a world in which “the eyes of the blind ones will be opened” and “no resident will say: ‘I am sick.’”—Isa. 33:24; 35:5.
How grateful we are for the precious truths in Jehovah’s inspired Word! Our hearts are full of gratitude for the loving support of our congregation, for without it much of our activity would not be possible. And especially because of Jehovah’s help, our lives have real meaning.
Laurence-Moon-Bardet-Biedl syndrome was named after four doctors who identified this recessive genetic disorder, inherited when both parents carry the recessive gene. Today, it is commonly referred to as Bardet-Biedl syndrome. There is no cure.