‘Will Lauren Ever Be OK?’

Raising two handicapped children — along with three healthy ones — has been challenging yet has given one family a true understanding of ‘unconditional love.’

The author, fourth from right, with her family. Jonathan, second from left, and Lauren, second from right, suffer from ML4.

by Randy Yudenfriend Glaser
Special To The Jewish Week

“Mommy, will Lauren ever be OK? Will she get married?” How do you answer your 4-year old daughter when she asks these questions about her “big sister”? After turning my face so that she doesn’t see the tears welling up in my eyes, I answer that we can always wish, but wishes don’t always come true, and for now we have to accept Lauren the way she is.
Lauren was born with Mucolipidosis Type IV (ML4), a rare Jewish genetic disorder that few people have heard of. Until the birth of our daughter 25 years ago, my husband and I also had never heard of the disorder. ML4 is an autosomal recessive disorder mainly seen in Ashkenazi Jews. An autosomal disorder is caused when

both partners carry the gene for the disorder — and there is a one-in-four chance with each pregnancy of giving birth to an affected child. ML4 causes psychomotor retardation, which affects a child’s ability to crawl, walk, talk and learn basic skills. It also causes severe visual disturbance and corneal clouding. An affected child requires one-on-one assistance for all activities in daily life. The extent of the affliction varies from child to child, and it is believed that there are many undiagnosed cases, as physicians still are not very familiar with the disorder.
At age 2, Lauren was diagnosed with ML4, after a year was spent searching for a diagnosis. Her early symptoms baffled geneticists until one physician who had previously seen ML4 recognized it. Initially, we were devastated as we still held onto the hope that eventually Lauren would “just catch up” and be fine. We were faced with the tremendous job of accepting a future of raising a multiply handicapped child. No one is ever prepared for this because it “isn’t supposed” to happen and only happens to “other people.” I recall crying helplessly in my mother’s arms, asking why she didn’t tell me this would happen in life. How could she know?
With great joy and exhilaration, we had anticipated the birth of our first child. We were confused and angry when we learned that our beautiful little girl would have to struggle to do what comes so easily to others. Yet we continued to hope because our love was undiminished.
We felt lonely and isolated. Although family and friends tried to support and soothe us, they could never understand. In our research, we read about the ML4 Foundation and when we contacted them, we immediately felt a certain relief hearing that others were able to go on and function as a family, some with healthy children as well. We became active in the foundation and found that it filled a very important need, providing camaraderie with other parents. I soon became the foundation’s president and remain in that role after 22 years. Two years ago I also helped found the Jewish Genetic Disease Consortium, along with representatives of 15 Jewish genetic disease groups; our aim is to educate physicians, clergy and the Ashkenazi Jewish population about the availability of screening for 11 of the autosomal disorders.
Even before her diagnosis, Lauren was enrolled in physical, occupational and speech therapies, and we continued on that path since these therapies are the only current treatment. She began school at age 2, and the first day was traumatic, not for her but for my husband and me. Lauren loved the bus ride and her day at school, but we were left with the guilt of sending our vulnerable little girl out into the world at such a young age.
Three years after Lauren was born, I gave birth to Allison, a healthy child who was a miracle of life. Watching her develop was a thrilling experience. She did everything well and without struggle. The experience was bittersweet. We felt joy and amazement at her accomplishments and also feelings of sadness and despair at what Lauren would never do. As for Lauren, she was delighted to have a baby sister.
I was frightened for Allison and the feelings that she might have to cope with. People said that she would be such a caring and loving child and, at age 22, she is indeed caring, loving and very patient. I did not delude myself into believing that she would not share the anger and ambivalence that we felt. It would have been unfair to deny her those feelings and only healthy to allow her to discuss and share them with us, for only then could she truly care and love.
Three and a half years after Allison was born, I gave birth to a son after being told that my amniocentesis was that of a healthy child not affected with ML4. Tragically, there was an error and Jonathan was diagnosed with ML4 at 3 months. (Since then, the gene for ML4 has been discovered and the test is extremely accurate.)
Our life was once again turned upside down and, perhaps because of Allison, we refused to “go down.” Allie was sandwiched in between Lauren and Jonathan, yet she had a wonderful childhood. When asked how her siblings’ disorder affected her, she answers, “It just was that way.” She used to pretend to be handicapped to see how her siblings felt and what their lives must be like.
As parents of handicapped children we constantly struggle with guilt about anything and everything. We cannot change the course of our lives, but if you are lucky you can learn how to move on and make things work out.
Three years later Zoë was born and two and a half years later, Jake, both healthy children. Our home is quite lively, and now Lauren and Jonathan live in a wonderful residence, the Center for Discovery. We own a second home nearby, and they are very much part of our lives and family. At the Center, they have friends, go to school, go on trips and have all the ancillary services that are required.
We are fortunate that Lauren and Jonathan are beautiful young adults who are alert and responsive. Jonathan can crush you with his hugs, and Lauren’s belly laughs are contagious. They have no language and few means of communication other than some signs that have been adapted for them. This makes life so difficult, as they understand so much yet cannot express their own feelings. They become frustrated at times because they are not understood. Sometimes, I find myself crying with them because I cannot make it easier, like mommies are “supposed” to do.
We have tried to live one day at a time so we could go on with and enjoy our lives, but it has not always been easy. Raising a handicapped child is a tremendous challenge that few of us take on willingly. Skills that come so naturally to healthy children are a challenge to Lauren and Jonathan. I mourn for the things they will never do and the lives they will never lead. Admittedly, when I have time, I grieve too for the loss and pain I will always feel. And yet if you ask me, I will tell you that my family is terrific and enjoys life to its fullest — and in addition to that we all have a unique understanding of the meaning of “unconditional love.” n
For more information, contact the ML4 Foundation at (718) 434-5067 or visit its Web site at www.ml4.org. You can also contact The Jewish Genetic Disease Consortium at 866-370-GENE or its Web site http://jewishgeneticdiseases.org.
Randy Yudenfriend Glaser lives in Brooklyn with her family. She is currently president of the ML4 Foundation and is on the executive board of the Jewish Genetic Disease Consortium.

Westchester Jewish Conference

Westchester’s Jewish Community Relations Organization