Ordinary Saturday.

Hello everyone,
Today I've met with a friend at my lunch break . I was really admiring her open to discussion personality.In our life it happen that we have friends of very different ages. For us it make no difference how old you are -what is important what we have to share and what quality they bring to the table. We are usually drawn to people with special unique vision or person with quality that we missing . I came to realize that without his girlfriend -My understanding and experience would not be complete. It's like a piece of ingredient in recipe if you miss something - final product will not be as good as it expected. My job is to absorb what is missing ,enjoy her company and hope that this experience is as good for her too. We all have different personalities and my point of perception is not always good for me. It's great that she was not afraid to see me and talk to me about everything and anything .
Now about our hero. Sammy has been all smiles in the evening. I think he missed me and we went out at evening-we visited old friends. Sammy had fun listening to talk at the table.
I reminded him that this is home of his old dog-friend -'Chuck'.This mini puddle did not like kids or next door dogs very much and one day last summer we came here for barbecue .
Somehow one dog from their next door neighbour rolled under the fence and end up in our back yard.
Sammy did not wait that long to make a decision -before we could say or do anything-he decided that there is no place for neighbours dog at this barbecue -he will only aggravate 'Chuck' and threw him over the fence back to his backyard. Thank G-d dog was OK,but he never -ever crossed that fence again.
Sammy always knew how to take care of things .He never needed guidance ,always easy going he find something to do or learn any were. His mind is always rasing -ahead of his time -you can tell his experience is far beyond his age.
Today was a great day-our evening was perfect .We enjoyed our company told stories ,laughed and relaxed . Every time Dad was trying to play with Sammy and covered his head in kisses,Sammy was reaching out to find shelter in moms hands.Have a good night.
Sincerely Sammy and Mom

Thoughts

Hello everyone,
Even know we did not make it in the top 2 finalists for Deerfield High school Grant to benefit United Leukodystrophy Foundation,presentation was a great experience and it was worth it. We need to spread the awareness of this often fatal -life threatening ,brain degenerative disorder that is misdiagnosed with ADHD nearly every time in X-linked child cerebral form.
We have had week of up and downs in Sammy's condition. Eventually toward the end of the week he bounced back ones again . But before that happened we went though this week with a hope for better ,doing all possible to better understand what plan should be developed for the future few weeks . Many friends ask what are prediction for the future? What are Doctors saying ?
We wish it was that easy. Many life threatening conditions are predictable and researched enough that Doctors can tell you what will happened next. In our situation ALD in rare and each case is unpredictable. All we know that Transplant can stop further spread of brain damage if it's done with in required time frame and its successful. Even than there are no guaranties it often takes 12-18 month for transplant to start working.
We are playing 'GUESS' game at this point. Since Sammy can't speak or see anymore we left wondering how much does he understand? Is he depressed ?
We know for sure that Sammy knows voices of every member of our family .He knows how much we love him ,he gets countless hugs ,kisses and positive energy. We comfort him and enjoying his company every day every hour every minute.I hope that he can connect and enjoy our vacation next week.
We are going to visit Mikey Mouse house-we are going to Disney World .!!!
The whole family will be reunited and going together . This is our time to make precious memories of being together,bond and ones again remind one another how important family is !How fragile our life is! How we can't afford to waste it on small stuff!
Can you forgive and forget? Can you help some one else to move on if you feel stronger? Can you think with your mind rather than your heart?
I struggle every day to find answers to this questions going trough our path one step at the time.
This is our test and we must complete this task to our best ability to safe our Sammy's life.
Coming closer to RoshHashanna -we know that miracle can happen-we will be waiting for it.

XOXO Sammy , Mom,Family.

Thank you friends and ULF

What a day!
Hello everyone.Today we really accomplished allot. Sammy skipped school and spend whole day with family running important appointments.
This morning we did a presentation in Deerfield High School about Sammy's illness and support to United Leukodystrophy Foundation.This is High school that Sammy's older sister Marina had graduated 2 years ago.This young adults raise money every year for a foundation of their choice.
Our friends from Foundation -DeKalb ,Illinois came to help. We had a beautiful Video-clip put together by our closest friends .This people truly dedicated to help us.From day of Sammy's diagnosis there was no asking or calling -they are always with us tuned to our daily challenges and ups and downs ,they celebrate and cry with us.This friends are the ones that you keep in your heart for ever .Thank you again for making a difference and not being by standers -watching what will happen next. We had a great presentation. After all watched video about Sammy and ULF Foundation we answered some questions and now hope that we will be one of 2 finalists .After we send Marina back to Collage and went to Children's Memorial for our monthly appointment at 11:00am. We consulted our Neurologist and Stem Cell Doctor.
We met Grandfather for lunch and finally at 4:30pm headed home.
Sammy was tired . He relaxed and rolled on his gym mat crawling over mom/ that was right next to him / few times and settled down for a short nap.
We picked up allot of positive energy from High School. This children really making a difference they are helping out important cause organizations that don't have much funding and in desperate need of help. We hope to help raise funds for this wonderful organization that helped us connect to other families with this disorder and most importantly doctors and scientists that are working hard to find prevention and cure for this deadly conditions all over the world.
Any one of us can make a difference in another persons life -have you looked around you lately!? I'm sure you know of a family struggle with an ill child or some person going through rough time ,just ask your self a question -what can I do to help?! Sometimes simple phone call is life saver or just letting them know that you care rather than finding excuses for your self.
XOXO Sammy and Mom

Happy B-Day Dad!

Hello friends,
Today we wish our Dad ,my husband Alex-Very Happy B-Day. He had a though week ,but bounced back fast-like that energizing bunny-'keep going and going.....'
It's hard to define his personality in just few words. Besides being an outstanding father and son he has been my inspiration in many ways for 14 years. Always positive,optimistic ,very loud he brings love,sense of old fashion family values to our family. From teaching our toddlers how to eat with knife and fork to getting tough on older daughter curfew time to the minute.He is very clear on his principals and hard on kids when they fight between each other. He always said -"You will have each other-when we are gone,no one is closer that your sisters and brothers -don't let anything change that!' On the other hand kids always knew daddy's soft spot. He will give his kids anything they ask for -but you have to prove it you need it! So from young age our kids have to learn how to negotiate and plead their cases.And than there is me-his wife. Well ,I guess he knows that no rules or restrictions applies to me.I have always been 'Free running horse'. Always independent -I 'm not exactly your usual 'home wife type'-Alex knows how to agree with me to keep things running smoothly in the house. So,here is to my husband and dad to 4 beautiful kids-
Happy B-Day Alex ,many more healthy, happy years to come,we hope that you continue to be strong ,fine example of a father,husband ,son and may be one day soon we will see our most desirable wish come true-Sammy will completely recover from this devastating illness for good.
Amen.
We believe in the miracle, we fight for Sammy's recovery ,no matter what it takes.Our latest news did not make us weaker-it made us stronger than ever before ! Are you a believer?!
Sincerely Gelena , Sammy,Mikhael,Marina,Eva and the rest of the family.

Pure,Beautiful Sole.

Hello everybody.
Busy week. We have been trying to estimate if Sammy has loss of vision. Just on August 1st we have seen a great eye Doctor .Today we repeated the test. Our suspicion was confirmed.
Unfortunately Sammy have lost most or all of his eyesight . It's just too had to tell exactly,but the difference in 6 weeks was significant. There are many other things that have changed. Sammy stooped sitting and supporting his back .He slides down little more than before while sitting. This are just the 'Facts' and we can't ignore them.
As per our believe -we think that 'Miracle is absolutely possible ' at any stage of Sammy's recovery. He is such a sweet boy with a beautiful sole .He is always smiling ,he brings sunlight in to our life's.
As a mother ,I can feel that ALL of my children have a very Special place in my heart. I'm grateful that we have chance to give love and warmth to our Sammy . Loved by everyone,we miss his jokes and remarks-his funny statements about things we not remember exist.


Sammy's beautiful sole


He can't SEE anymore-but he can SMELL my skin,

He can't DRAW anymore-but he can still SEE some dreams,

He can't READ anymore-but he can IMAGINE and FEEL,

He can't REMEMBER G-D -but he knows he is REAL

He can't SPEAK anymore -but he can HUG and REACH for more,

OUR BEAUTIFUL SON -WITH PURE,CRISTAL,YOUNG SOLE!!!

September 17-2008, Gelena Zeltser

He has many different ways to show his affection and now those senses that use to be less intense will be more vibrant.I will never stop kissing and hugging him and telling him goofy stories,just like before.He always recognized a kid in me-He use to say that 'Mommy is silly'.For me not much changed only some of Sammy's physical abilities. So ,we will deal with this day at the time.
He has an unbelievable love for life.He always heard birds singing,sun shining and love to watch snowfall .
We will never stop believing in Sammy and never give up to the last breath.

XOXO Sammy and Family.

Emotions

Hello fans,

I think of our daily routine is similar to weather channel. You can guess all you want,but nature will take it course. Every day I wake up and go through roller coaster like emotions. What today will bring us?! You would think that experiencing and dealing with Sammy's illness on daily bases in the past 7-9 month would give us certain stability?!

I was looking through our family pictures last night. From kids birth pictures to B-Day parties and family vacations.

Sammy looks so cute on this picture from Disney Park when he was-4 .Perfectly normal,happy,goofy kid.

I found my self in the deep thought about a choice.How some people get sick by making poor choice in their life. Well ,what comes to my mind -it's that in this genetic condition -Sammy had no choice to make and I as a mother who past on this X-chromosome mutation to him - now left wondering and praying for Sammy survival.

Sammy loves going to school. He has been working very hard on 5 days a week 9-2 school schedule and 2 days a week Rehab after school. He is exhausted by Thursday. Fridays have been most challenging .We thought about reducing his week to 4 days a week,but decided to wait.

Sammy has been using weekends for relaxation.Dad has been putting Sammy in the gait trainer -walker on better days. I would say fatigue , lock of energy has been biggest problem for Sammy.

G-D willing ,miracle will happen with a speedy recovery for our Sammy.

Have a nice Sunday,

Sincerely Sammy and Mom.

Hope for a future.

Hello everybody,
This week is almost over and toward the end of the week Sammy gets tired. So much to learn ,so much to see .Today Sammy had a first community trip to the park.After school he was going to Rehab and first time in several month fell to sleep in afternoon.
Mom had a interesting finding .Talking to United Leukodystrophy Foundation we find out that in only 41 cases of ALD was registered in 25 years in the State of Illinois!!! . At this moment we might be one of few families with ALD child in Illinois -known or registered. You know how I mention before published odds don't work in our case? Well if you think of the statistics of ALD its 1-17.000 . How come at present time we have just us and may be few more unknown families out there in the state of Illinois?!Population in our State was about 13.000.000 in 2006. So where are the odds now? It means that for our family is much more difficult to fight for Sammy's much needed Special Needs equipment,information,share coming challenges with other parents, meet in the support group ?!How about getting another approval for complicated necessary test ? Thank G-D for Internet. Connecting to right people,information,resources -is a must.
Recently I received another e-mail of a desperate mother from Spain. She found my e-mail and it was -'Life saver' for her to hear our story, communicate and connect to us as a parents.
In reality, where do you go? If you find your self in rare disorder square?!
This task is not easy with any ill child -we love our kids and will do anything to help them.
But today I realized that we are in much smaller shell than I ever imagine.That I can't afford to fall apart any time soon!
When we try to connect to Specialist in ALD -there is only handful of Doctors in the world and we had either contacted them by e-mail and Sammy's MRI was reviewed that way or we have met them in person. We are working with close friends of the family and in the middle of making presentation about Sammy- to one of the charitable organization.If we are picked -we will be able to get funds toward United Leukodystrophy Foundation -organization that connects together Doctors and Scientist for the future cure for ALD . Have you ever had a dream? Did it ever come true?
XOXO Sammy and Mom

Weekends

Hello friends.
In the past few days we watched Sammy going from a very good day to just a good day. You see we don't have any other days.Its a Very good day or good day. Over weekend he was connecting to people differently.I mean looking right in to their eyes something Sammy was not able to do before.He was constantly trying to get up. He is ready for the next step. When we reach out and let him stand on his feet he is scared.He grips tight and you can see he is afraid .
Today we learned how to adjust Sammy's walker. He is in desperate need of this equipment and after 4 month of fighting for it we finally got it. Next item is his wheelchair! It has been 5Th month from the initial order request,but I hope to G-D that by the time we get it -he will be walking on his own! I have such a urge to send it back saying-Thanks,but we don't needed anymore!!! G-D willing!!
First time on the gait trainer-walker-Go Sammy! At first he was trying to taste the straps and then we started to Cheer and this became allot more interesting. He was very exited to stand on his feet.He is tired of laying. We will continue to use it -it a great piece of equipment -it helps.
Another funny episode from this weekend. After having his lunch Sammy was seating next to Grandma . She started to sing a song they use to sing in the car before. All of a sudden ,Sammy started to make sounds. Not really to melody ,but using his voice as he would sing. This is great.
His sleeping pattern is very odd. He would roll around his bed at nighttime from 8pm till 11pm or even later not being able to fall to sleep.In the morning we all know it's impossible to get him up. But I figure out how I can wake him up sometimes from deep sleep. I take him straight to the warm bath. Great advantage to wash,brush his teeth,clip his nails. He does not mind it. Water feel good and he likes being clean and comments from his family -how good he smells after bath.
Good night, xoxo Sammy and Mom.

Cutie Pie

Hello everyone, How cute is Sammy? He just got his First real hair cut yesterday. He is one hansom dude!

School week ended today.Sammy is exhausted with all the new activities.He is working hard to adjust to his new busy schedule. I decided to share this newest pictures with our fans. Every day is a new day as we moving to Sammy's full and complete recovery. As a part of my commitment to do everything in my power to help other parents that just got 'The ALD news '.

I like to share everything I know to make their path easier than ours. I share any available information I got. In our unique situation you need a friend that walked a few miles in your shoe.

And that is exactly what I can do to help another mom that just got hold of my e-mail address and has a parent-to-parent 'Life Line'. We wish that Family all the best for the future treatment.

They will find a support in their need to talk to some one in the same situation.

Sincerely Sammy ,Mom

Brain Freeze....

Hello fans -
Getting a good news -before next concern?!
Just few days ago,we received a great new from a Specialist in ALD after reading Sammy's last MRI on the large screen- It's BETTER than it was expected!!! Just as we celebrated our Happy moment ,I got a phone call that got me worry. Sammy has been part of wonderful class and school .In the past 2 weeks,there has been specialist's and other professionals that observed Sammy's behaviour and try to learn his style and his needs.The concern is-is there seizures? We have been raising questions about seizures ,but Sammy's December EEG had not show anything. Seizures is very common condition in ALD cases.
I know that just before his hospitalization in January -2008 -one time I saw him sitting on the kitchen floor saying 'I had a Brain Freeze' - this happened only ones . At that point he had ,so many neurological problems with swallowing and gait ataxia that this was put aside until after Transplant. I think now is the time to revisit this possibility again. We trust judgment of our Pediatrician and Cell Stem Team and our Neurologist ,so the next word is after our Doctors. Let's hope for the best.
XOXO Sammy and Mom.

Live and learn...

Hello everyone.
Something that has been on my mind for a while. I heard this somewhere and keep thinking about it.
One day Almighty had given a task to two man. He told them to carry heavy cross on their back to the river. First man carried his heavy baggage with honor and understanding quietly- taking a day at the time even know it was very heavy. Second man was constantly complaining how heavy and unbearable this task was. G-D decided to help second man and reduced his baggage in size .After a short while second man complained again about how heavy it was -while the first one keep taking this task and dealing with it as a challenge with honor. G-D decided to help second man again and reduced the size and weight of his baggage again. As we all expected second man was not happy again it was still too have for him. G-D reduced his cross to size of the palm of the hand. Soon both man came to the river. They saw Haven on the other side and really wanted to go there. The first man took his large and heavy Cross from his back put it across and crossed to the other side. The second man drowned.
It seems that in our task we are taking every step with allot of meaning to it.There never a question why us!? There is a question how can I go though it faster and make it most positive experience .I know for certain you can't run , you can't hide,you can't cheat -you have to complete your program.Sometimes it feels its coincidental,sometime it feels it faith,but most of the time I feel we must to get to the other side to find Sammy's complete spiritual and physical recovery.
Learning experience along this whole ordeal -how to have patience ,how to reach out to others,how to listen and understand fine corners of our souls,believe.Most valuable lesion I've learned is how to forgive and forget. This helps me to move on to the next level of our task.
This story makes sense to me.What about you?

XOXO Sammy and Mom.