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UnderGround Forums >> Please help Rachel get to Disney World

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8/5/13 4:53 PM
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Severnsmustache
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Didn't see this until today. I am going to send it around my office this week and get her taken care of.

8/5/13 4:53 PM
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Knockdown1967
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https://www.facebook.com/photo.php?fbid=10201265226145493&set=a.1706880884658.90950.1617135435&type=1&theater

 

Rachel with Renzo in 2005, she was at the NY Academy often with her mom, while I trained.

8/5/13 6:29 PM
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rhoadspga
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john_d1974 -

we cant send every "special" child to disney world!

Reminds me of a story I read a long time ago about a little girl walking along the beach after a bunch of starfish got landlocked. And she's going and picking them up one by one and tossing them back into the ocean. A "wise" old man walks up and says to her, "there's thousands of starfish here, there's no eat you can make a difference!"

She picks another one up and throws it into the ocean then looks at the man and said, "I made a difference to that one."


So, no, we can't send every child with special needs to Disneyland. But just maybe we can help send this one. Phone Post 3.0
8/5/13 6:31 PM
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rhoadspga
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*way, not "eat" Phone Post 3.0
8/5/13 6:43 PM
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i remember halloween
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rhoadspga - *way, not "eat" Phone Post 3.0

Good story.  For a second I thought you were Charles Barkley and was going to congratulate you for much improved grammar.

8/5/13 10:54 PM
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bluecloud
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rhoadspga - 
john_d1974 -

we cant send every "special" child to disney world!

Reminds me of a story I read a long time ago about a little girl walking along the beach after a bunch of starfish got landlocked. And she's going and picking them up one by one and tossing them back into the ocean. A "wise" old man walks up and says to her, "there's thousands of starfish here, there's no eat you can make a difference!"

She picks another one up and throws it into the ocean then looks at the man and said, "I made a difference to that one."


So, no, we can't send every child with special needs to Disneyland. But just maybe we can help send this one. Phone Post 3.0

I like it!!! Thank you :)
8/5/13 10:55 PM
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bluecloud
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Severnsmustache - 

Didn't see this until today. I am going to send it around my office this week and get her taken care of.


I really appreciate it :)
8/6/13 12:12 AM
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manzuri
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Ttt for Rachel!

best of luck to the both of you! Phone Post
8/6/13 3:44 AM
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tiger07
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TTT

Hope she gets there!
8/6/13 3:09 PM
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bluecloud
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Synado - 
bluecloud - 
Synado - Where's RACHEL?!?!! Many groups that do this already.

I think you were asking where Rachel lives, we live in NJ, MANY groups are out there and they do associate with each other so that wishes are not granted multiple times to the same person. But even if they didn't communicate with each other I wouldn't contact one because there are TONS of kids with special needs and they all should be able to get a wish from a wish granting organization when they are dealing with a life threatening illness or life threatening disability. We had a wish granted in 2006 and that will be our one wish. Seven years later I would like to do something special for Rachel.

I was quasi making a batman joke. But now that I think I have established this is not a scam. I will go ahead and donate a little. Take pictures!

Thank you - every little bit helps!! And I will definitely takes TONS of pictures and post :)
8/7/13 1:25 AM
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bknumber1
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TTT Phone Post 3.0
8/7/13 1:29 AM
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UGCTT_sakurabas ear
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Bump Phone Post
8/7/13 1:42 AM
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melendez
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I'd be wiling to auction some autographed gear to a UG'er and donate the money.

Let me know.

8/7/13 2:02 AM
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jfcundiff
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Bluecloud send me a PM. I have something I could do for you.
8/7/13 2:40 AM
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bknumber1
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Just talked to a buddy. He doesn't have much money but what he is going to do is donate a Gi and have all the top BJJ Black Belts out here on Oahu sign it. I will ship it to Susanne as a gift to Rachel. Phone Post 3.0
8/7/13 4:18 AM
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bluecloud
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bknumber1 - Just talked to a buddy. He doesn't have much money but what he is going to do is donate a Gi and have all the top BJJ Black Belts out here on Oahu sign it. I will ship it to Susanne as a gift to Rachel. Phone Post 3.0

SO COOL!!!! Thank you, he and I just talked and I'll make sure to get photos of Rachel with her Gi - perfect for the fighter that she is!
8/7/13 4:19 AM
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bluecloud
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Article from Joey "Knockdown" Brown and Rachel from Lockflow, originally in NJ Herald News 2005

http://www.lockflow.com/fighters-soft-side-gift-little-girl
8/7/13 4:25 AM
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bluecloud
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melendez - 

I'd be wiling to auction some autographed gear to a UG'er and donate the money.

Let me know.


Very cool, this way someone gets something awesome in return and I appreciate your generosity!
8/7/13 12:52 PM
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jfcundiff
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bluecloud - 
melendez - 

I'd be wiling to auction some autographed gear to a UG'er and donate the money.

Let me know.


Very cool, this way someone gets something awesome in return and I appreciate your generosity!

Sent you an email.
8/8/13 12:01 PM
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bknumber1
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TTT Phone Post 3.0
8/8/13 3:18 PM
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bluecloud
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Thank you!
8/8/13 11:49 PM
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bluecloud
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ttt
8/9/13 12:12 AM
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FeardBucker
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LiveToFightInc -
kying418 - 
Knockdown1967 - 

For a number of years Susanne Flanagan worked as my assistant when I was fighting professionally.  Her daughter Rachel has severe special needs and is a sweetheart, she's become like a daughter to me.  Her mom is trying to bring her to Disney World and if you can do anything to help I know she'd be grateful.  Thank you!

http://www.gofundme.com/3kdpww

 


I'm sure she probably already knows, but Susanne should also look into the Make A Wish Foundation.

http://wish.org/refer-a-child

My son has a genetic disorder and they have been working with him (and my ex wife- who submitted the applications, etc), and are in the process of planning something really cool for him.

Make A Wish is an awesome organization. Good luck with that and I wish you the best with your son. I'll be saying prayers. 

My org is called Live To Fight.  We will be raising money for people in the MMA community who are suffering from life threatening illnesses. So that includes children and siblings. We will also have a MMA Make a Wish aspect. If any of our beneficiaries want to meet a fighter or go to a fight we are going to try and make that happen. 

Would be great if you guys could help spread the word and if you know of anyone you think would we could help send them our way! Or anyone you think may want to help us. 

It's www.livetofight.org and My email is Kristen@livetofight.org 

Thanks guys!! 

Kristen Brown :) 

Absolutely amazing! Where are you guys based out of? Phone Post
8/9/13 12:35 AM
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bluecloud
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LiveToFightInc - 
Knockdown1967 - 

For a number of years Susanne Flanagan worked as my assistant when I was fighting professionally.  Her daughter Rachel has severe special needs and is a sweetheart, she's become like a daughter to me.  Her mom is trying to bring her to Disney World and if you can do anything to help I know she'd be grateful.  Thank you!

http://www.gofundme.com/3kdpww

 


 

I just started a non profit organization and we are just getting off the ground. I can not promise anything right now because I have to go through my Board of Directors but do me a favor and go to www.livetofight.org And fill out the form to tell your story and ask for help. Our first event isn't until September. I'm pretty sure in the future we can help you guys with something. Thanks. And good luck :) 

Kristen :) 


Kristen, I sent all our info to you from the Live to Fight website. Let me know if you got it, you can pm me
8/9/13 12:45 AM
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bluecloud
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TTT for Rachel

http://www.gofundme.com/3kdpww

I've had a few people who don't know Rach or haven't seen her in a long time ask about Rachel. Rachel's diagnosis is Subcortical Band Heterotopia (SBH) which is a cell migrational disorder. Don't know why it happened but for some reason the cells in her brain didn't migrate to where they should have. Normally cells migrate from the center of the brain to the outer part but Rachel's did not so she has thick areas in the middle of her brain that shouldn't be there and then on the outer part, if you see a photo of a brain it's got lots of ridges and grooves, Rachel's doesn't have that, it's smooth and that's where the cells were supposed to travel to. Her whole brain is affected by this structural disorder. Because of it she has severe delays and she is a severe case of SBH. She also has a Cortical Visual Impairment which basically means that we don't know how her brain processes what she sees so she is registered with the Commission for the Blind. She definitely does see though.

Rachel is 16 but skill-wise somewhere between an infant and toddler level. She's non-verbal and 100% care. She has no daily living skills of her own and battles constantly with seizures to which have not responded to medications. It's a lot of work. Feeding her, changing her, walking with her, making sure she's safe during seizures. It's not easy doing it as a single parent, but God knew that and has placed good people in our lives to help. I do have nurses that come to the house 6 days a week to help - Thank God for them. Right now Rachel is not in school due to her seizures and the difficulty of getting in and out of our apartment on a second floor with many stairs but we are on waiting lists for better housing. Working hard with a parent advocate to get all of Rachel's educational needs set up at home until our situation is better when she can go back to school.

Rachel also has the additional diagnosis of Lennox Gestaut Syndrome with Intractable Epilepsy, which basically is the worst it can get when it comes to seizures and one of the most unresponsive to treatments. Seizures are horrible and Rachel has a few types. They get in the way of her going to school, having fun, learning, eating, etc. If there were anything I could change for Rachel, I would take away her seizures. Everything else is gravy. Seizure medications are sedating, many side effects and still seizures on the medications. The seizures break my heart every time Rachel has to go through one and she goes through many that have been increasing more as she gets older and have been causing deterioration of her skills. Rachel recently (April 2013) got the VNS (Vagus Nerve Stimulator) an implant placed right under the skin in her chest with a wire wrapping around her Vagus Nerve going into the brain that will give off electrical impulses that hopefully will stop some of her seizures. As of July 2013 I'm only seeing a very slight improvement I think, it's still way too soon to tell. Rachel was on the Ketogenic Diet recently for seizure control for the second time but unfortunately it had no effect for her this time (the first time was in 2001 and she was seizure free and off ALL medications for 2 years!) Rachel also is going through Botox treatments and a serial casting program on both of her legs right now to hopefully walk flat-footed instead of on her toes. She will be in casts for 6 weeks through the summer that will hopefully bring good results.

With all of this, I have to say there are MANY positives to my life with Rachel. She's sweet as can be, innocent, she gets to live in this bubble world of complete love and being taken care of. She has no other health issues (feeding tube, trach, etc.) and has an easy going, sweet personality. Never ever one complaint. She hasn't cried in years and truly is always a delight to be around. She smiles and laughs and I swear she sees angels. She loves Disney and Mickey Mouse. She enjoys lights and fireworks, wild rides and the wind in her face. Rach comes alive when the sun goes down and it cools off and the breeze kicks up. Rachel likes the water and you can't be in a pool with her and think you won't get your hair wet. She drools and slobbers on you, gives too many open mouth kisses and steals your heart. Can I have gotten any better? I can say with all sincerity that the Lord certainly picked the best of the bunch for me. One day, I know in heaven we will be complete, there she will say Mommy and I'll watch her run and jump. It will be a celebration. Now we live with struggles but she gives much happiness. I love my Rachel girl.

I would love to bring Rachel to Disney World, for there she is really a different child. I will be honest and say we have been before but it's been years and she gets such joy from it. The magic of Disney seems to have a great effect on her - alert, vocal, no seizures - really amazing.

And we REALLY could use a vacation :) As Rachel's mom, it's been a tough year worrying about her and back and forth to doctors, hospitals and therapies. In the midst of all of this I took care of my dad with cancer and my mom with Alzheimers who both passed away. My dad 4/25/13 and my mom 5/31/13. I miss them immensely.

ANYTHING RAISED OVER OUR GOAL AMOUNT WILL GO TO A WHEELCHAIR VAN WHICH WE WILL DEFINITELY NEED AS RACHEL CONTINUES TO GROW AND SO DOES HER WHEELCHAIR.

Thank you & God Bless, SUSANNE AND RACHEL xox

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