Our kids are eligible for having a wish granted through the Make-A-Wish Foundation. My son Ryan had his wish of going to a professional motocross race granted earlier this month, and he was in heaven! It was by far the best time of his life. He got to meet Ryan Dungey, who's currently in first place on the pro motocross circuit, and even got a sweaty, dirty, signed practice jersey from him!
Make-A-Wish is a wonderful organization who grants wishes to kids with life-threatening illnesses or conditions. It's a common misperception that they only grant wishes to kids with terminal illnesses. I first applied for Ryan when he was initially diagnosed with an inoperable brain tumor, but then when his diagnosis was changed to an AVM, it turned out that he was still eligible.
You can find out more about the Make-A-Wish Foundation by going to www.wish.org. You can nominate your own child or someone else's, and their eligibility is verified by their doctor. Let Make-A-Wish make your child's wish come true. And what's even better, you get to watch the absolute delight on your child's face and forget about all the yucky stuff for a while.
Make-A-Wish also takes donations because granting wishes is not free for them. They're a great organization. Check them out.
Kelly
Tags: Make-A-Wish
Permalink Reply by StarieNite on June 1, 2011 at 12:09am My mom was trying to get him to pick Disneyland. We live in AZ so my mom and dad where going to save up and take my family to meet us there, but Dev decided that he had been the DL enough and wants to go big. So my dad is planning on having a "business trip" to Orlando and tag along and if my sister in law is in Naples (she works there six months out of the year) she might do a day with us too.
Permalink Reply by sam drummond on November 23, 2011 at 6:30pm I applied for my son Luke 2 people from make a wish came to see him we are now waiting to hear from them hoping to hear something before Christmas he really wants to go to Florida to swim with the dolphins
Permalink Reply by Kelly Nelsen on November 28, 2011 at 6:56pm That would be awesome to swim with dolphins! I hope you hear something soon!
We live in NJ and my daughter had her embolization/angiogram with a follow up craniotomy in NY, July 2009. A week after surgery we took her to a Paul McCartney concert....had contacted Make A Wish... We'd hoped to arrange for her to meed Paul or even just better seats but were told she didn't meet the criteria. It was disappointing but we figured in the big scheme of things "this is probably a good thing"...happy her situation was no longer deemed life threatening. It is a wonderful organization for those who do qualify !!
Permalink Reply by sam drummond on December 2, 2011 at 8:38pm update on Luke's make a wish rang them yesterday they told me they are just waiting on his neurosurgeon to confirm he can fly then they can allocate him a wish granter so exited for him xx
Permalink Reply by Jaynied (Jake's Mam) on December 12, 2011 at 5:00pm I can't understand why, having read all of these, but Jake isn't eligible. I phoned Make a wish and they said Jakes surgeon said he wasnt eligible so there's nothing they can do. I think it stinks, Jake is really upset about it as he'd already picked what he would wish for. I don't get it! His avm ruptured, he almost died, had 3 lots of brain surgery, and possibly has another avm, but that isnt 'enough!
Permalink Reply by Kelly Nelsen on December 13, 2011 at 8:28am A lot of people, including doctors and surgeons, mistakenly think that Make-A-Wish is only for terminally ill kids. That's not the case -- it's for kids with life-threatening conditions (which may or may not be terminal). I wonder if you could call surgeon and ask him why he thinks that Jake isn't eligible? Maybe he doesn't realize the distinction with Make-A-Wish?
Permalink Reply by Jaynied (Jake's Mam) on December 14, 2011 at 4:32pm Kelly, I would try and contact Jake's surgeon but I'd be wasting my time - he is not much of a people person and refuses to speak to patients on the phone. We were given some scary news by his registrar in the summer which turned out to be incorrect, but the surgeon would not speak to me to clear this up and i spent nearly 2 weeks almost out of my mind with worry. In the grand scheme of things I suppose it doesnt really matter, Jakes alive and well and thats what matters to me. But if there was a chance he could get some kind of treat to go someway towards making up for what hes been through I would love to take it. Its just frustrating.
Did you wait a while. I submitted our story about a month ago and Ive not heard anything yet.
Permalink Reply by Kelly Nelsen on December 14, 2011 at 8:48am Yes, it can take a few months, although you could call and ask if they've received your application. I know they have to verify it with your child's doctor, and their response to you depends upon how long your doc takes to respond.
Permalink Reply by sam drummond on April 7, 2012 at 8:18pm Hi Kelly just to let you know we fly out to Florida on the 21st of May to fulfil Luke's wish to swim with dolphins he is so excited xxx
Permalink Reply by Kelly Nelsen on April 8, 2012 at 5:56pm That's awesome!! I'm excited for him and for you guys! You'll have a great time -- one that he'll never forget!
This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Disabilities
Eagle Syndrome
Erythromelalgia
Fabry
Fibromyalgia
Glossopharyngeal Neuralgia(GPN)
Lupus
Multiple Myeloma
Myositis
Narcolepsy
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Synovial Sarcoma
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
Posted by chels925 on June 3, 2012 at 10:37am 0 Comments 0 Likes
Hello everyone. While I do not have a AVM, mine is only a VM. It is in my right cheek. I have been undergoing treatment for it since 2006. My first treatment was in September 2006. I had some complications (I got an infection and went septic). I…
ContinuePosted by Dansky on June 3, 2012 at 7:15am 0 Comments 0 Likes
The first rupture of my AVM brought me to total shutdown you could say. from normalcy to all of a sudden a twist of life.
I move on ... but I cant escape...
I was at work (luckily I was in office, crowded, people are present, the…
ContinuePosted by ramona777 on June 2, 2012 at 3:51am 2 Comments 0 Likes
Hi to all my newfound friends . may not be online much in the next 5 wks but wanted to say to each and every one of you, many thanks for your welcome, friendship and support. be back soon. If anyone can advise me how to join AVM australia? Thank…
ContinuePosted by Celina on May 31, 2012 at 8:59pm 2 Comments 0 Likes
it went good he wants to do a big test on me he has to open the top of my leg then put a tiny cam up my leg into my head i will be put to sleep for it he wants to look at it.
Posted by Hannahpoppe on May 30, 2012 at 12:45am 3 Comments 0 Likes
Hi everyone!
I'm a new member here...
I got diagnosed with AVM this fall. After having really bad headaches for a long time, I decided to visit the doctor. She made the descision to send me on an x-ray and then they saw a 2cm AVM om…
ContinuePosted by Jaime G. on May 29, 2012 at 7:32am 1 Comment 0 Likes
I'm being treated for Temporal seizures; simple and complex, aware and absence. The 1st one(went undiagnosed)happened almost 5mos post embolization/craniotomy. In Novemember simple happened 1 or so bi-weekly. This Jan I went inpt for longterm…
ContinuePosted by Armando A. on May 28, 2012 at 8:02pm 0 Comments 0 Likes
We never realize the value of organ donation, until we're on the receiving end.…
Posted by josh54 on May 28, 2012 at 12:20pm 2 Comments 0 Likes
My AVM was near my right lateral ventricle. It ruptured (very painful) and I had a crainiatomy. After the surgery there were difficulties and I was in a ten day coma. When I awoke the AVM was removed successfully but as a result I have numbness,…
ContinueOctober 11, 2011 at 6pm to October 10, 2012 at 7pm – Some where with good Coffee
2 Comments 1 Like© 2012 Created by BensFriends.org
