View Full Version : Need some pixie dust for my son

Hayden's Dad
04-03-2007, 07:44 AM
This is my first posting to Intercot, although I wish it was under better circumstances. I need some advice. My 14 month old son has been diagnosed with a rare and terminal neurological degenerative disease called Krabbes disease. The doctors have given us a timeline of six to twelve months. We are huge disney fanatics like most everyone else here, and it is our dream to have a family vacation at Walt Disney World while we have the time. There apparently are not any organizations that will help families with children under the age of two and a half, at least none that I have found. We have talked to Make-a-Wish, Children's Wish Factory, Child's Wish, and a couple of others as well, and gotten the same answer. My family has pulled together and they are getting us to Walt Disney World in May, but it has strained them to their limits. Does anyone know of any organizations that may help families with children under the age of two and a half? Any ideas or suggestions would be helpful. Thank you.
I have posted a link for any one who would like more information on the disease and information about a fund started in his name by my sister-in-law.

04-03-2007, 08:35 AM
First of all, I welcome you to INTERCOT, and like you, wish it was under happier circumstance.

Secondly, I did not know that these organizations had "age restrictions" and find that completely appalling! The only other organization whose name I know of is "Give Kids the World". I do not know if they have age limits too.

I am sorry I cannot be more helpful, but the main reason I wanted to reply is just to tell you how sorry I am for your son's diagnosis. I will add your family to my prayer list, and keep you in my thoughts. I hope you have a lovely trip in May.

04-03-2007, 09:05 AM

My heart goes out to you and your family. May God give you strength and peace.

Try bighope.org I know of a child who got a trip to Disney through them and she was just about 16 months old.

I will be praying for your family.

04-03-2007, 09:22 AM
Definitely contact Give Kids the World. They are in Orlando. They work with all of the wish organizations who send kids to Disney. They should be able to point you in the right direction or maybe even set you up there themselves :) You should be able to google them and find them but if you need more help, please send me a message.
We stayed there in 2003 when we went with Make a WIsh.

I am awfully sorry about your son. There really aren't any words. I just wish tragic things like that never had to happen.

I hope you have a wonderful Disney vacation; please let us know how it goes.

Hayden's Dad
04-03-2007, 09:25 AM
Thank you to all of you. I have contacted Give Kids the World and they only work through the different organizations they do not grant the wish themselves, but I will give bighope.org a try. Thank you for all the prayers.

04-03-2007, 02:57 PM
I'm sorry that I do not have any information about organizations, but I have added your family to our church's prayer list. We will keep all of you in our prayers.

04-03-2007, 09:22 PM
First, let me say "welcome" and like you, I wish it was under happier circumstances. I don't have much information to give you re: organizations, but just wanted to let you know that Hayden and your family will be in our prayers, and I hope your trip in May gives you many wonderful memories. God bless - be sure to keep us posted on how your son is doing.

04-04-2007, 10:47 AM
I don't know exactly how feasible it would be, but if you are near a big church or college, maybe contacting them would help. I know the churches I've been to have taken up collections every so often to help out families for various reasons. Also, many sororities and fraternities (particularly service ones) are very big on fundraising and helping out different people. Maybe a club as well. I know at my college we had a group raising money for a baby across the state who had a disease. It is worth a try anyway.

I'm so sorry this has happened to you. I know it is trite, but everything DOES seem to happen for a reason. Your baby will be thanking God directly when he gets to see him in heaven for giving him such an amazing family to be a part of. You are definately in my prayers!

Hayden's Dad
04-04-2007, 09:35 PM
Thank you, I will look into some of the colleges around here. My sister-in-law who started the fund for my son is going to turn it into an organization to help families who have children between 3 and 36 months which as we have found out is desperately needed. Thank you all for your support and prayers.

Kristi Kay
04-05-2007, 12:42 PM
Check out Give Kids the World....Its an Make a Wish-like Foundation that Disney Works with....I doubt they have an age restriciton....

Keep us updated.

04-05-2007, 05:14 PM
Welcome, and lots of prayers are coming your way. I saw your site was via the Greensboro Taekwondo. Are you associated with them? If I remember correctly, they are an ATF school which my DS6 takes from also here in Montgomery. Perhaps ATF could help if that's the case.

Hayden's Dad
04-05-2007, 06:11 PM
I don't think they are associated with the ATF the school is called Tae-Kwon-Do America. They are a national school and we do have some located in Mongomery, but I don't think they are the same ones. My instructor and I have decided to hold a board breaking event in July with another one of the local schools. Home Depot is supposed to be donating the wood we need so all the proceeds will go to Hayden's Fund. Thank you for the prayers. I just looked at our calendar and it is only 35 days til we have our Grand Gathering with my family in Walt Disney World, entitled Hayden's Magical Wish. We have been scheduled for one of the Grand Gatherings at Tony's Town Square, where we get to actually meet Tony himself along with a bunch of other characters so we are really looking forward to this trip. Thanks again for all the prayers, the more the better

04-05-2007, 09:19 PM
I'm sorry I do not have any ideas regarding organizations that may be able to help, but I wanted to let you and your family know that we are praying for dear, sweet Hayden and your entire family.

You are all in our prayers. God Bless!

04-06-2007, 06:37 AM
This is probably a silly question, but have you contacted Disney directly to see what agencies they could put you in touch with? I am sure that they would have lists of groups that do this type of thing.

I hope things work out for your trip! Here's a little fairy dust to help things along! :pixie:

Hayden's Dad
04-06-2007, 10:35 AM
Yes I have contacted Disney directley and they recommended me to the facility that houses the families while they are on their wish. Sorry I can't remember the name of it offhand. Unfortunately all of the other ones they have recommended all have age restrictions, but hopefully my sister-in-law will get her organization started and other families in this situation won't have to keep hearing "sorry we can't help" after a while you start imagining them sayins "sorry we can't help your child isn't as important." Don't get me wrong all of the organizations out there do wonders for families and children, but it gets easier and easier to get aggravated with them. Sorry to rant I just had to vent. 34 more days until "HAYDEN'S MAGICAL WISH!!!" [/COLOR]Every day we hear something new and exciting about our trip, I have downloaded and prininted tons of information from intercot and we are going to find every treasure we can while we are down there!! Thank you all for all of your support.

04-07-2007, 12:47 AM
I don't have any suggestions, I just wanted to say my thoughts and prayers are with you and your whole family. I hope that this trip is fantastic for all of you.

04-09-2007, 08:41 PM
First let me tell you how sorry I am, you are in my prayers. Have you tried to have your doctor or social worker contact make a wish and explain things to them. I remember hearing the reason why they have a age limit is because at such a young age it's more the parents wish than the childs but I think maybe in this situation maybe they would reconsider their age restriction. I hope you have a wonderful trip and my heart goes out to you.

Here we go again...
04-10-2007, 10:43 AM
Have you tried Kiddskids.com?
I listen to Kidd Kraddick in the morning and they give Disney trips to sick children and their family every year. And guess when the trip is? In November! They should be taking requests now.
I give to this fund raiser every year and watch the video of the children spending 5 days in the most magical place in the world. Southwest airlines donates all of the flights and that has made me love Southwest even more.

I wish you and your family the very best. We will all be praying for you.

Hayden's Dad
04-10-2007, 12:35 PM
Thank you all for the suggestions. Yes I have had our doctors talk directly to Make-a-wish and it's not that they don't care, but if they make the exception they could loose their charter. Unfortunately November will probably be to late, my wife and I have scheduled a second trip at the end of November as a tribute to my son. Hopefully he will be able to make the trip too, but we aren't expecting that to be the case. The good news is my sister-in-law is starting her own orgnaization for children between the age of 3 months to 36 months, because like she said "you have to have something to look forward to." So my son's trip will be the first wish granted! Everything is all planned out we have several meet and greets and at least one character meal per day while we are down there. We will be doing everything possible and loving every minute of it. When she gets everything officially set up I will post the information.

04-10-2007, 12:43 PM
I'm very sorry about your son and I wish him and all of your family the best. Stay strong. :(

04-11-2007, 12:52 PM
As a parent, my heart goes out to you and your family, as well as my prayers
I have sent you a private message with some information to check out
God Bless

04-11-2007, 01:06 PM
Though I cannot offer any other angencies than listed here just wanted to send you some :pixie: :pixie: :pixie: :pixie:

Hayden's Dad
04-16-2007, 03:48 PM
Thank you all so much for all the well wishes, prayers and most of all the pixie dust.

04-22-2007, 08:42 PM
When in May will you be there?
My heart is breaking for you and your wife and Little Hayden.:sadwave: :cry:

04-22-2007, 08:59 PM
We will be there in May as well. I will be thinking of your family! I'll also be praying for you all! I hope you are able to find some help for your trip! I also hope that he'll be joining you in November too!

Hayden's Dad
04-22-2007, 09:58 PM
We are going May 10-14 only 2 weeks and 4 days left!!!! We are so excited. We have plans to get his first haircut at the Harmony Barber Shop, we are getting ornaments made, we have plans for a Grand Gathering hosted by Tony from Lady and the Tramp, and we are going to have an awesome time. Also we get to celebrate Hayden's 16 month birthday when we get there on the 10th. I just wanted to say thank you all so much for all of your thoughts, prayers and pixie dust.

04-22-2007, 10:15 PM
Hooray for getting to go so soon! I hope the trip is everything you hope it to be and more. I'm so sorry that you are planning this trip under such painful circumstances, but I hope the trip itself is without pain and full of joy. Make a lot of wonderful memories! :pixie:

04-23-2007, 07:11 AM
I'm so very sorry to hear all of this. I never knew these organizations had age restrictions. I'm proud of your family for starting your own organization. I will also keep you in my thoughts and prayers.

04-23-2007, 10:23 AM
I'm so very sorry. :pixie:

04-23-2007, 11:57 AM
I am so thrilled you get to go so soon! I will praying every day of your trip for that day to be absolute perfection for your family. I look forward to hearing all the details....

04-24-2007, 12:17 AM
I'm so sorry. Prayers and :pixie: :pixie: :pixie: on the way.

Hayden's Dad
05-09-2007, 10:08 AM
Thank you all so much!! We are so excited we are leaving TOMORROW!!!! We are scheduled at a character meal almost every day we are there and they all include Mickey Mouse at some point and time, who was the third face Hayden ever recognized. Thank you all once again, and I will give you an update when we get back.

05-09-2007, 10:28 AM
Have a magical trip!!! :mickey: :pixie:

05-09-2007, 10:30 AM
I hope this trip is everything you and your family pray for. While you are there you should get the birthday button for your child. everyone will notice and give you lots of special attention to make the trip even more magical.
God Bless

05-09-2007, 05:22 PM
I don't know of any organizations, but my thoughts and prayers are with you. I am so sad for you situation and I pray that you will find comfort in the days ahead. :(

05-09-2007, 05:32 PM
I'm sorry I am so late in reading this post, but I wanted to let you know you, your son and your entire family will be in my prayers. I hope this trip is as magical as it can possibly be and I wanted to wish you a wonderful time! I can't wait to hear all about it when you get back. Prayers and pixie dust on thier way.

05-09-2007, 06:18 PM
God bless you all. Pixie Dust to you:pixie: . I have biggest lump in my throat and the tightest feeling in my chest over this post. I have a son that 18 months old and I will not even try to imagine what you must be feeling. I believe in miracles and I believe that with prayer and a pure heart that ALL THINGS ARE POSSIBLE!!! You hang in there. Know that you and your family will be lifted up in prayer this very day. I hope that you have a wonderful trip and that God will put his hands around your son and heal him. :pixie:

05-09-2007, 06:31 PM
I hope your family and little Hayden has the most Magical trip ever!!! Thanks for opening my eyes to the different organizations age restrictions. Keep us posted on your trip and to your sisters organization.

05-09-2007, 09:03 PM
I wanted to wish you a magical trip. I'm so sorry for the problems you have encountered with your son. I wish I knew of a way to help but I can't think of anything. Please let us know how things went for you!

05-10-2007, 12:37 AM
Our thoughts and prayers go out to you and your family. I hope Hayden's trip is truly magical! :pixie:

05-28-2007, 07:49 PM
you will have a magical trip forget everthing and enjoy your time in disney and take alot of pictures :minnie::mickey3::tink::pixie: also welcome to intercot:welcome:

Marilyn Michetti
05-29-2007, 07:37 PM
God Bless you, and God Bless Hayden.

I'm hoping and praying that you find the organization that will give you all the trip to remember.

Hang on to Intercot. You've found a safe, soft, place to land, and our hearts will go out to you now, and in the future.:hug:

05-29-2007, 07:54 PM
I am so sorry to hear this about your son. It is always tragic when news like this is heard, epsecially to children.

My heart goes out to you and your family. I hope you trip was great, and that Hayden loved every minute of it. I'm sure he did.

Prayers and lots of:pixie: for everyone involved.

Donald Duck 224
05-29-2007, 08:33 PM
I hope you had a wonderful trip. My thoughts and prayers will remain with you.

05-31-2007, 12:47 PM
You and your family will be in my prayers.