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Help needed for a little trekkie. Please read

anitavarrassi

GROUP: Members

POSTS: 5

Report this Jan. 27 2014, 9:53 am

My son is a huge star trek fan, and he is needing your help. We found out he was a trekkie because when he was only 12 weeks old he had hernias and would get into spurts where he would cry and cry. NOTHING HELPED, I was flipping through the channels and first contact was on, he got quiet immientatly and watched it. Ever since then when he gets upset, star trek calms him down. Its crazy, when he gets a new therapist or goes through another surgery we have to bring along star trek and he will focus on it instead of what hes going through. The doctors do not know what is wrong with him and a few months shy of his 3rd birthday they made the decision to no longer "actively pursue a diagnosis" what children's hospital told us this meant was they will treat conditions that come up but they think that whatever he has is not treatable/curable or he is past the point of medical return. Last July we were told he had only a year left, I do not believe that as they cant tell me whats wrong with my baby. But what we do know is that its rare genetic, neurological, and degenerative. My baby is a fighter, and he continues to fight everyday. Some days are better than others. Some days he can walk and play and others he cant. His therapists have likened him to a child with tramatic brain damage but although his mri is abnormal they can not find anything on why hes like this. His body is turning on him, in the last few months hes lost his abilty to drink liquids by mouth and is feed by a gtube, and his bowl muscles have weakened to the point that hes on miralax to help him. (but we have been told that it will only help for so long, then we will need something more drastic)


 


Heres where I need your help:


Liam's orthopedic is wanting to try one last thing, they want to fix his hips. (he has multiple problems that i will list below) They are hoping that in fixing his hips, it will help with other things or at least stop making doctors say that some of the problems are because of his hips. (like his not walking and falling alot when he does) He doesnt do good with surgeries and always has complications, we are hoping for the best but this surgery really scares me. His surgery will be around 6 hours long on each hip (done 4 weeks apart) he will be in the hospital for around a week and will be in a spica cast for at least 6 months. After that he will have to relearn how to walk. I really want to keep his spirit up during this long battle that hes in for. We have the basics for his surgery, but are still needing a spica chair. Our dream is to be able to get him a star trek themed spica chair. We have contacted ivy rose spica chairs and shes willing to take donations for his chair on her page. Please even a dollar or two will add up, we can not afford to get this without some help, and i really didnt know where to turn. I know this is a long shot, but i had to try. A basic chair will be $200 with shipping, I'm still waiting on an exact price for the star trek chair but im guessing around $300-$400 with shipping. I have posted a wish on heronetwork for help with the chair but so far have no heroes. He will have his first surgery at the end of Feb/early march.


 


hero network wish:


https://heronetwork.com/wish/index?id=1515548


donate on ivy rose website:


http://www.ivyrosespicachairs.com/apps/donations/


donate directly to us via paypal (all money will go towards his chair, if we recieve anything more it will go towards needs for liam and his two upcoming surgeries)


anitavarrassi@gmail.com


 


Liam's Prayer page:


www.facebook.com/fightingforanswers


 


If you have any questions feel free to ask, I am willing to answer anything.


 


 


 Liam's Conditions:


abnormal lordosis


a arachnoid cyst in his Right Cerebellopontine Angle Cistern with enlarged space around it


 


Ataxia


Autism


Arthritis


Bilateral Dislocated Hips (with Defective
ossification, dysplastic acetabella, & damage to his iliac wings bilaterally)


Chronic Regression


dysphasia (which has caused him to need a gtube)


finger clinidactyly bilaterally


Developmental Delay Globally


irregular Gait


Hypersensitivity,


Hypotonia


Hearing Loss


Muscle weakness


Nonverbal (although last week he said "Hi" so theres hope he will talk again)


Osteoponia


Plagiocephaly


Seizures


Severe intellectual disability

Sora

GROUP: Members

POSTS: 2606

Report this Jan. 28 2014, 8:15 am

That is a very touching story. And yes Star Trek is very well known for being theraputic as well as being entertaining. I would love to help and wish that I could. But I am a college student still in my freshman year paying for school and other life costs with only my wife working as a server. We have nothing to give other than our sympathy to your situation. I sincerely hope that things will get better for your son, and perhaps someone who is more financially stable can help you out. But keep Star Trek on! He may pull through just from seeing the various medical things on the show and seeing characters pull through various medical conditions. One that really jumps to mind is Ethics from TNG's 5th season, where Worf has become paralyzed and may not ever be able to walk again and wants to end his life because of it. In the end he obviously recovers, but the episode may be encouraging to your son.

anitavarrassi

GROUP: Members

POSTS: 5

Report this Jan. 28 2014, 2:19 pm

thank you so much, i will have him watch that episode. i know he will love it. right now we are watching wrath of khan (i just have to fast forward the bug part)

Sora

GROUP: Members

POSTS: 2606

Report this Jan. 28 2014, 6:11 pm

haha yeah, Wrath of Kahn is intense in certain momnets. The only reason it got a PG rating was because in 1982, there wasn't a PG-13 rating yet. Otherwise, I think a lot more of the films would have PG-13 ratings. I know that the dvds and blu rays are expensive. You may consider signing up for Netflix. Right now anyway, Netflix has all of Star Trek on instant streaming with the exception of a handful of movies. But has all 30 tv seasons of Star Trek. Neither of the JJ Abrams movies. But as far as the original 10 movies go, they have everything except The Final Frontier, The Undiscovered Country, and Insurrection I believe. I think they have the rest of them. It's only $7.99 per month. So cheaper than the dvds or blu rays if you don't have the funds for them. With him being so young, he'd probably get into Voyager more than any of the others. Voyager has the stories, plus the action, but not so much action as to be too intense. TNG while generally the most popular among the majority of fans is a very talky and thinking show. DS9 and Enterprise also have their fair share of action, but those two are the darker series. Season 3 of Enterprise is probably the darkest season in all of Star Trek and probably the most intense. All great stuff, just may be too intense for someone his age. Best of luck to you. If you have any questions about the franchise, I'll be happy to answer them for you.

queenuhura

GROUP: Members

POSTS: 114

Report this Jan. 28 2014, 6:24 pm

I have always been a Trekkie but have been watching the shows almost exclusively during an extended family crisis. With the encouraging scenarios in the story lines of Star Trek, it is an escape from the daily gloom and doom of reality in life and on tv (the news).  Of course Liam was not able at age 12 weeks to understand the scenes, but there seems to be something inherently good about the Star Trek universe that crosses all barriers. Hopefully you will get more heroes and all you need for Liams chair and whatever else he needs. I wish you and your family all the best, and you are in my prayers.


*Infinite Diversity in Infinite Combinations* *Live Long and Prosper*

anitavarrassi

GROUP: Members

POSTS: 5

Report this Jan. 28 2014, 6:36 pm

lol yeah we have netflix, but wrath of khan is on our dvr so it gets played more. I will check out voyager and let him watch that tomorrow, hes getting ready for bed now. We have watched it some but not alot, but i know he will love it.


 


THANK YOU SO MUCH WHOEVER DONATED $25 TOWARDS LIAM'S CHAIR ON HERONETWORK!!!


It brought me to tears when i saw that, it means more than you will ever know. It makes me feel like we will be able to afford the custom star trek one. 


heres what the owner of ivy rose spica chairs, Stephanie (she also has die hard trekkers)


"I have an idea I think would be cool. I was looking at the original Star Trek symbol and I think I could cut the sides of the chair in that shape and paint it gold with the black star in the center.  I'm still working on something cool for the tray, I was thinking of buying a poster of the Enterprise and decoupaging it to the tray.  If I cover it with several coats of polycrylic it will be waterproof and durable.  This way you can get the kind of detail you want far better than I could ever paint it. :-)  The front and back could be red, gold or black.  What do you think?  "


 


thanks again everyone

Sora

GROUP: Members

POSTS: 2606

Report this Jan. 28 2014, 9:38 pm

If you want to let him see the build up towards Voyager here's what you should do. Show him The Wounded from TNG Season 4. Ensign Ro from TNG Season 5. Journey's End from TNG Season 7. You may inherently need to do Where No One Has Gone Before from TNG Season 1 and Remember Me from TNG Season 4. The Maquis parts 1 and 2 from Season 2 of DS9 and then Preemptive Strike from TNG Season 7. All these episodes will set up the Maquis storyline that dives into the Cardassian/Bajoran conflict and when the Federation starts handing off territories to the Cardassian Empire to help out with making a new peace treaty, and there are some Federation Citizens that don't take kindly to having their homes handed off to the Cardassians. And a rebellion is formed called The Maquis. That is where Voyager begins, is with the Voyager crew being sent into the badlands to capture a maquis ship and are accidently pulled into the Delta Quadrant by the Caretaker, looking for replacements to take care of the Ocampa to keep them safe from the Kazon.

Anime Odo

GROUP: Members

POSTS: 209

Report this Jan. 29 2014, 10:41 am

congradulations on  an aspiring trekie


"I don't believe in luck, but I appreciate the sentiment." - Odo

anitavarrassi

GROUP: Members

POSTS: 5

Report this Jan. 29 2014, 6:44 pm

thanks yall, today has been a tired day. he has these at least once a week but been having more lately. they help reguevenate him to play/fight on other days. he just lays on the couch or whereever i place him, so we have been watching voyager today.

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