Need some pixie dust for my son

[Hayden's Dad]

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.
greensborotaekwondo.com/MeetHaydenJones.pdf

[Christine]

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.

[quicksand]

Hello

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.

[merlinmagic4]

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]

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.

[Cinderelley]

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.

[Dsnygirl]

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.

[TinyDancer]

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]

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]

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.

[Strmchsr]

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]

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

[DisneyWhirled]

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!

[BMan62]

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!

[Hayden's Dad]

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.

[PAYROLL PRINCESS]

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.

[Stitchahula]

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...]

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]

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.

[pink]

I'm very sorry about your son and I wish him and all of your family the best. Stay strong.