By Frimet Blum
Eight-year-old Chaim T. is a healthy little boy, but he too is a victim of ALS. His father, a once-vibrant yungerman who worked, learned, and raised his family, was stricken with amyotrophic lateral sclerosis, also known as Lou Gehrig’s, three years ago. Today this brilliant talmid chacham is so sick he can’t walk, move, eat, or even speak or breathe on his own. The only part of his body that is not afflicted is his mind. His children are forced to watch him deteriorate and suffer.
His mental acuity makes the condition more devastating. Chaim’s father can’t escape into unconsciousness; he can’t flee from the torment that consumes every moment of his life. He is fully aware of his condition, and knows that there is no cure. The disease is fatal. By now, his ALS has progressed to a point where the only way he can communicate is by moving his eyes. He can’t express his pain and his thoughts. He can’t say that he wants to change position or go to a different room. He can’t even smile at his children! It’s hard to say just who suffers more–the father or his children.
Until recently, children like Chaim received little assistance. But in recent months, the HEALS organization has stepped in to relieve the burden and make things a bit easier. HEALS’ mission, as stated in their slogan, is “helping families with ALS.” The organization is a backbone of support for families who live with unfathomable stress and pain.
Children like Chaim live in a constant state of limbo. Their father or mother is alive but not a parent. Chaim’s father can’t lead a Shabbos seudah, help with homework, or play a game. Instead of him caring for his children, his children often care for him. They spoon-feed him (as long as he can still swallow), wheel him around, and talk to him–though he can only participate in the conversation by blinking his eyes.
Chaim has a mother, but she’s really not there for him. She is too busy to care for her children physically, and too heartbroken and overburdened to tend to their emotional needs. Much of her burden is financial. The cost of caring for an ALS patient is staggering. While insurance covers some homecare aide services, an ALS patient needs round-the-clock care. Families have to pay for as much as 12 hours a day of care. They also have to pay exorbitant out-of-pocket costs for everything from therapy to medication to doctor’s visits.
That is besides the cost of maintaining a household. With one parent incapacitated and the other busy with the ill patient’s care, there is no income at all. For ALS families, putting food on the table and paying rent and tuition are impossible burdens. But that is not all.
Children like Chaim are in emotional turmoil. Their lives were turned over, and there is no normalcy or security. School is the one thing in their lives that stays the same–except that no one makes sure the children do their homework, so they inevitably fall behind. HEALS helps by paying for tutors. The organization also pays for counseling, so that the children can talk about their pain and frustration. HEALS pays for housekeeping help that keeps homes functioning, even when no one has the strength to throw in a load of laundry or cook a meal.
The families depend on HEALS, and HEALS depends on you. These are members of our community. Their children are in our yeshivas and schools. They are our brethren.
HEALS is endorsed by Rav Yeruchem Olshin, shlita, Rav Yaakov Perlow, the Novominsker Rebbe, shlita, Rav Chaim L. Rottenberg, shlita, Rav Michael Twersky of Milkwaukee, shlita, Rav Elya Ber Wachtfogel, shlita, and Rav Moshe Wolfson, shlita. The organization is led by a distinguished board of directors that includes prominent askanim. Join HEALS in helping these families.
Please mail donations to HEALS; 1318 Coney Island Avenue, Suite #14; Brooklyn, NY 11230. To donate, call 718-705-9777 or visit HEALSorg@gmail.com. v