Sammy Zeltser's Wish

This is the story of our friends Alex, Hannah Gelena and Sammy Zeltser, reprinted with permission from their excellent website www.sammyzeltserswish.org

If you are able in any way, please help.

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To many friends who frequent the Zeltzers' hospitable home, introducing Sammy, the kindest and the wittiest kid, would be superfluous. Knowing that thousands of concerned people will visit this website and will want to help out both the family and the Foundation, we thought it was important that you all "meet" our hero. He is a hero for stoically dealing with and adjusting to his new debilitating condition, giving warmth and hope to distraught family, and uniting all kinds of people.
Please meet our precious Sammy, before and now.

Before

Sammy was born a perfectly healthy kid 7 years ago to a Russian immigrant parents Alex and Gelena. He is the youngest child in a family and has 2 loving sisters, Eva and Marina and a big brother, Michael

Known for his sharp tongue and a witty mind, he's always kept his teachers and parents on a tip of their toes. Sammy is an excellent reader and speller, very curious, loves swimming, playing Wii, and going to Sunday school learning Hebrew and about Jewish traditions.

He expresses himself with the skill that many adults would covet. Sam is loving and giving boy and emanates warmth to all around him. His presence is comforting to all and he acts as a concerned protector of the nature and defender of the weak.

Always happy, gentle and full of positive energy, Sam plays a peacemaker and a diplomat in a family. He is a big time hugger, loves his parents, brother, sisters and grandparents and is not shy to kiss them all and to remind how much he loves them.

Something unusual started happening to the flawless Sammy a year and a half ago. To everyone's surprise, he became forgetful and easily distracted during school. Sam's doctor diagnosed him with ADHD - attention deficit disorder and started treating him with psychotropic stimulants.

With no visible improvements in his concentration, Sam started exhibiting other disturbing behaviors - seclusion, silence, and a slowing physical activity. He continued to be on ADHD medications. After sounding an alarm from teachers and parents that his condition is worsening, Sam was taken off the drugs at which point severe neurological change was hard to miss. Desperately seeking second opinion about Sam's condition, he was brought to a new pediatrician who immediately scheduled emergency EEG, MRI and specific blood tests.

After undergoing MRI at Evanston Northwestern Hospital, Sam was rushed to Childrenss Memorial Hospital due to life-threatening deteriorating condition found in his MRI scan. It was confirmed that Sammy is suffering from a genetic disorder, adrenoleukodystrophy.

Sam's parents and the friends of the Sammy's Wish Foundation felt it was important, for two reasons, to describe what Sammy is going through as his illness is progressing and a race to save his life is on. First, if more people internalize how dangerous and crippling this disorder is, the more awareness will be spread and the more tragedies like this could be prevented. Second, it is important that all the well-wishers have an honest picture of what Sammy and his family are going through. Naturally, we hope to share good news soon!

Now

Sammy is still very loving and kind, but it is difficult for him to express it verbally. His speech is now somewhat slurred and voice very quiet. Instead of talking, he expresses himself by using his finger to draw images or letters in the air. He likes to touch-feel people to give positive energy.

He has stiffness in his legs and it is increasingly difficult for him to walk without having to lean on someone and limping. It seems that he continuously feels off-balance: he prefers to sit or lay on the floor and when he stands he either grasps for the air with his hands or has to hold on to people or subjects to stay erect. It is even difficult for him to sit in a chair for a short time - he slides down.

Sammy got burned recently on the stove, resulting in big blister which would ordinarily hurt a lot. Not a thing, he did not even react to the burn or the wound: a symptom of sensory neuropathy.

Sammy often closes his eyes tightly as if he is having a seizure and says he's had a "brain freeze" or "my brain is about to explode." He has an insatiable appetite as if the body is always hungry and does not know it just got a lot of food. He drools, his energy level is very low, he stopped reading books and even playing Wii games. He forgot the songs that he and his Grandma Lena had always been singing in her car.

He does not like to visit doctors but cooperates bravely. Seeing nurse with the needle, he cries "I do not want to give blood." Yet he is voluntarily rolling up his sleeves. He gives hugs to nurses, doctors and technicians. He is kind and a gentle hero.

Despite all the changes in his body he must be feeling, Sammy is brave and full of positive energy. He gives us hope and strength by giving us his piece of mind that is way beyond his age. This conversation took place just before midnight on New Year's Eve, 2008:

Sammy: Mommy, God is giving me directions and I have to follow them.
Mom: Ok. How do you get these directions?
Sammy: I talk to God
Mom: Where is HE? Do you hear HIM?
Sammy: Yes, He is up there [pointing to the sky]
Mom: So, how does He talk to you?
Sammy: He tells me what I need to do NEXT and I have to do it!
Mom: Wow, you are special boy and do you know how much I love you?
Sammy: Yes, I know, but no kisses for you tonight.
Mom: Why not?
Sammy: You cry too much. Sweet dreams.

The Zeltsers have agreed to take a chance and subject Sammy to bone marrow transplant, the most realistic and only option at this stage. The lab results from Children's Memorial Hospital confirmed that one family member appears to be a match for Sammy.

Beginning February, 2008, the Zeltsers will be very busy taking necessary steps to prepare Sammy for aggressive chemotherapy treatment to be followed immediately with the bone marrow transplant procedure. G-d willing, transplant is successful, we should be out of the Children's Memorial hospital and home free in the next seven to eight months.

We ask every concerned person to BELIEVE in our success and MIRACLE will happen.

If you wish to support the Zeltser Family and /or Sammy's Wish Foundation, please read How Can I Help?

"Oops... I'm off balance again... Mommy, we have to fix this..."

- Sammy Zeltser

Spherical Knowledge

My son Matt, back home for winter break, is a junior at Washington University studying electrical engineering. For the first time, I heard from him a seed of discontent. Why? The school, he feels, is not preparing him for a job when he graduates.

The coursework is so theoretical that is seems to be missing an essential link, between the practical and the theoretical. How to apply this knowledge? It doesn't seem within the curriculum.

This got me thinking about my graduate school days at the Jane Addams Graduate School of Social Work, at the University of Illinois in Champaign-Urbana. I too, was disgruntled.

I remember complaining bitterly to a professor who had become a friend, that there seemed to be precious little actual practice in the art of working with people in therapeutic and service-delivering situations. I was intensely interested in "group work" the discipline of creating forward movement in groups of people, whether in a work, therapy or self-help environment. The only way to gain skills in this field is to actually do it.

My professor's answer, "This isn't a trade school. This is academia."

I guess, in the minds of those who design "higher learning," the institution provides a theoretical framework, and the work place provides the practice. If this is more universally true, I can imagine scores of disappointed college students, who dream of being prepared for and capable of performing well in their first big job, yet feel the embarrassment of unpreparedness when the big day comes.

My comment to Matt: Maybe, in a way, you are being prepared for the real world. If you feel that you need something to round out your education, you need to expend real effort and pursue it. The outside world does not cater to your every need, why should the university? If you want something, go out and get it.

I was happy to hear that he was able to structure his next semester by getting more involved in hands-on experiences, just the way I also learned to cope in social work school so many years ago. I managed to find real-life practical experiences within the academic environment, and now so was Matt.

This started me on my next academic sore spot. I remember numerous times in school where the teacher seemed to jump to point #2 without even acknowledging that a predecessor point #1 existed. I remembering this occurring to me in biology, Latin, calculus, algebra 2, and computer science. These are the ones I remember. I am sure there were more.

When I shared this feeling with Matt, he said he shared some of the same experiences. At school, theories of electrical signal propagation were cast out without a foundation or unifying principals. Ok, I get the formula, he said, but how does it all fit together?

I expressed my wish that "first things should be taught first". Whoever writes these curricula, I said, should always remember to teach the foundation first then build upon that foundation.

Matt agreed, but then took it farther, into a realm I love known as Matt's brain, where recursion and inversion are folded and unfolded playfully like an origami flower.

He said, "The subject is a set of variations on the same formula. Sometimes energy is the variable. Sometimes time is the variable. There is no start. There is no end. It is like a sphere."

"Maybe the best way to learn is to first fly around the sphere and see the big picture, then dive inside the sphere and look out from within." He cast that pearl out while casually munching on a piece of chili omelet.

After pondering that one, also chewing on an identical chili omelet, I said the only thing which seemed appropriate, given the circumstances. "Arf", I said.

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