Wednesday, December 12, 2018

Elisheva Stein and her son Yitzchak Michael (Isaac)

Passaic—Yitzchak Michael (Isaac) Stein is an extraordinary boy with an extraordinarily rare genetic disease  called Aicardi-Goutieres Syndrome (AGS). According to his mother, Elisheva, only 400 people in the world have it. “It’s a rare disorder of a rare disease,” she says. Thanks to Bonei Olam, an organization dedicated to helping families struggling with infertility but is also at the forefront of reproductive medicine, research and technology, the gene was finally identified a few years ago. Isaac’s older sister

Chavie, a”h, suffered from the same disease and passed away seven years ago.

In addition to his primary diagnosis, Isaac also has a mutation of cystic fibrosis. The two diseases together have left him with a multitude of issues affecting nearly his entire body. He is unable to walk or sit up by himself or use his hands. He also cannot talk. He communicates with facial gestures and being asked yes and no questions. Isaac is alert, aware and completely cognitive. Despite everything he has gone through and continues to go through, he always has a smile for everyone.

Isaac spends his days in a very large wheelchair that needs to be able to recline and also be able to accommodate all of his medical equipment. To shower, he needs to be placed in a special shower chair and wheeled into an accessible shower. He has a specialized feeding tube, takes 30 medications a day through the tube, and gets suctioned frequently to prevent choking. Isaac often needs oxygen, for which he is hooked up by a long tube to an oxygen concentrator that stays in one room while the tube trails throughout the house.

Unbelievably, up until Isaac was six, the family lived on the second floor of a two-family house in Passaic. Then they moved into a house that had two bedrooms on the first floor, one for each of their disabled children. The plan was to build an addition to accommodate the children and their medical equipment. However, due to the financial burdens of the many medical bills and other extenuating circumstances, the addition had to be put on hold.

Though a writer and editor by profession, Elisheva has effectively become a nurse, case manager, patient advocate, scheduler and a doctor by being Isaac’s primary caregiver. “The title of my future book, the one I have in my head, is ‘That Never Happens.’ I literally hear that every day of my life,” Elisheva told The Jewish Link.

Three years ago, Sara Ayelet was born to Elisheva and her husband, Barry. She is a happy, precocious healthy little girl. “I worry about Sara Ayelet,” Elisheva shared, “especially since she has such a sick brother and parents who are constantly stressed. I have to tell her to be quiet all the time because her brother is sleeping. She’s a typical little girl and it’s hard for her to always be quiet.” The house is very small and Isaac’s room is next to the kitchen and the front door; with his need for quiet while he tries to sleep in the morning, after being up a lot of the night coughing, it’s very difficult for Sara Ayelet.

The family has now reached the point where they need to move forward with the addition. They’ve got the plans, they just don’t have the funding. The proposed addition, for which they have plans drawn up, will create a kitchen that Isaac will be able to fit into with his wheelchair. It will also give him a bigger handicapped-accessible bathroom that will better accommodate his shower chair. The addition contains a special room for a handicapped-accessible, temperature-controlled hot tub that is now on the back porch, which allows Isaac to have therapy for his contracted muscles. And the plans also will give Isaac a new bedroom with soundproof walls.

Isaac spends his days at home. He is no longer able to go to school, and so teachers and therapists come to the house. Because Isaac can only be on the first floor due to him being too heavy and too fragile to be carried upstairs, the living room has become his treatment room. But it’s also Sara Ayelet’s playroom and the family living room. The addition includes a family/therapy room, which will alleviate the crowded conditions for everyone.

“We have been waiting a long time to create a home where we can live comfortably and care for Isaac in the best way possible,” says Elisheva. “Having a proper home to live in would give us a measure of happiness and ease lives that are indescribably difficult.”

Readers who would like to make a tax-deductible donation can write a check made out to Eva Stern Ahavas Chesed Fund and send it the fund c/o Victor, 25 Pleasant Ave., Passaic, NJ 07055 Att: Stein Family. Those whishing to make a donation online can go to thechesedfund.com/cause/accessible-home-for-yitzchak. Prayers are also welcome for a speedy recovery for Yitzchak Michael ben Elisheva.

By Sara Kosowsky Gross