Disney Information Station Logo

Go Back   The DIS Discussion Forums - DISboards.com > Disney Trip Planning Forums > Disney Trip Reports > Pre-Trip Reports and Plans
Find Hotel Specials & DIScounts
 
facebooktwitterpinterestgoogle plusyoutubeDIS UpdatesDIS email updates
Register Chat FAQ Tickers Search Today's Posts Mark Forums Read





Reply
 
Thread Tools Rate Thread Display Modes
Old 11-10-2010, 09:48 AM   #1
HeatherSP
Mouseketeer
 
HeatherSP's Avatar
 
Join Date: Nov 2010
Location: VA
Posts: 218

A Wish in the Making

Hi I am Heather and I am very new to this. I have been lurking and reading some of your trip reports to find out some info. My story is a bit different from most of yours.
I will start by introducing my family. I am Heather 35, stay at home mom. My husband is Steve 35, distribution worker. We have been married almost 9 years. I had 2 children with my first husband that my husband now has legally adopted. They are Bri (14) and Alex (almost 12). My husband and I felt led by God to do foster care in 2004. We fostered for about 5 years and had 8 children placed in our home during that time. Gracie came to us in June of 07. She had been extremely abused. Gracie found her special place in our hearts and in our family. She became our 3rd forever child in October of 08. A few months after Gracie, in November of 07 Lhea came to our home. Lhea was diagnosed at 5 months old with Langerhans Cell Histiocytosis (LCH). She was a very sick little girl. She was removed from her birth family for neglect and medical neglect. Her birth family wasn’t caring for her. She was not getting the medications she needed or being brought to the hospital for her chemo treatments or checkups. This added 4 more months onto her treatment for a total of 16 months of chemo/steroid treatment. It wasn’t long after Lhea was removed that her biological sister Ciera was also removed. Ciera was originally placed with another foster family. The agency felt that us having 4 children, one who we were going to court with to prosecute her family for the severe abuse and another who was so sick, was a lot of work for us. But I couldn’t imagine the sisters being kept away from each other. I fought hard to have Ciera placed in our home. Eventually I won. In December of 07 we became a family with 5 children. After social service’s many unsuccessful attempts of reunifying Lhea and Ciera with their birth family, the girls were placed for adoption. In January ’10 we officially became a forever family of 7. (Lea is now 4, Ciera almost 6 and Gracie just turned 9)
About a month ago I joined a group of moms who have children with LCH. I heard that many of the children we getting wishes from Make A Wish so I sent an email asking if Lhea was eligible even though she was now in remission. They called several times and sent paperwork to her oncologist. A couple of weeks later we were told that she is medically eligible. I was so thrilled that this child who has had such a rough start in life will have a chance to feel extra special. Make A Wish called a couple of weeks ago and said that the local volunteers should be contacting us to interview Lhea. We haven’t heard anything yet. Last week we did receive an official letter saying that Lhea was medically eligible and listed our volunteers’ names. We are anxiously awaiting their call. Lhea has said that her wish is to dance with princes Tiana at Disney World. She is so excited already and is asking every day.
I know that I am starting posting way early but I would love advice from other wish parents.
HeatherSP is offline   Reply With Quote
Old 11-10-2010, 10:12 AM   #2
maroo
DIS Veteran
 
maroo's Avatar
 
Join Date: Aug 2008
Location: MS
Posts: 8,042

I found you!!

Great start!

I will link this on the Wish Trippers thread so that other folks can find ya!
maroo is offline   Reply With Quote
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 11-10-2010, 10:14 AM   #3
my2girlsrock
Mouseketeer
 
Join Date: Nov 2010
Location: New York
Posts: 241

Hello Heather,

I actually believe we have "spoken" on facebook. My daughter is Taylor & she has ND LCH. I believe we spoke through messages about the possibility of going to WDW as a wish..... I remember your daughters & your story. It is nice to see you on here.

Where are you at with Make A Wish? I hope to hear more on your story.....
__________________

Teresa
Mom to DD Taylor (8) Wish Kid, DD Samantha (7) Wife to DH John
Our puppy dog Molly
My PTR : http://www.disboards.com/showthread.php?t=2590945
Taylor's Carepage link ~ http://www.carepages.com/carepages/TaylorR
my2girlsrock is offline   Reply With Quote
Old 11-10-2010, 11:38 AM   #4
HeatherSP
Mouseketeer
 
HeatherSP's Avatar
 
Join Date: Nov 2010
Location: VA
Posts: 218

Quote:
Originally Posted by maroo View Post
I found you!!

Great start!

I will link this on the Wish Trippers thread so that other folks can find ya!
Thank you! You are awesome!!!
HeatherSP is offline   Reply With Quote
Old 11-10-2010, 11:44 AM   #5
HeatherSP
Mouseketeer
 
HeatherSP's Avatar
 
Join Date: Nov 2010
Location: VA
Posts: 218

Quote:
Originally Posted by my2girlsrock View Post
Hello Heather,

I actually believe we have "spoken" on facebook. My daughter is Taylor & she has ND LCH. I believe we spoke through messages about the possibility of going to WDW as a wish..... I remember your daughters & your story. It is nice to see you on here.

Where are you at with Make A Wish? I hope to hear more on your story.....
Yay!!! Yes we are facebook friends. I had emailed you about your wish recently. Like I mentioned in the post we got an official letter and are STILL waiting on local volunteers to call. Since it has been almost 3 weeks since our verbal "approval" I called them again today. The lady said she will get in touch with the volunteer coordinator for me.

Anyone else who wants to get to know me and my family more is welcome to add us to facebook http://www.facebook.com/HeatherStarr74 I have LOTS of pictures there and many "notes" about my family and my children.
HeatherSP is offline   Reply With Quote
Old 11-10-2010, 11:50 AM   #6
HeatherSP
Mouseketeer
 
HeatherSP's Avatar
 
Join Date: Nov 2010
Location: VA
Posts: 218

My attempt to add a picture



In the back Alex and Bri
Front L-R Ciera, Lhea and Gracie
HeatherSP is offline   Reply With Quote
Old 11-10-2010, 02:04 PM   #7
HeatherSP
Mouseketeer
 
HeatherSP's Avatar
 
Join Date: Nov 2010
Location: VA
Posts: 218

Talked to make a wish

I did talk to the volunteers and they are trying to coordinate to come out here tomorrow. if not it will be next week. How did you all work out dates? I have 5 kids all in school so christmas break would be great. But it is probably to late in the year to ask for that? Maybe easter break? what have you guys done about school? i wouldn't like the summer it would be wayyyy too hot. what do you suggest?
HeatherSP is offline   Reply With Quote
Old 11-10-2010, 09:31 PM   #8
Loodlow
Mouseketeer
 
Join Date: Sep 2009
Posts: 135

Subscribing to watch your beautiful family adventure through this magical time!
Loodlow is offline   Reply With Quote
Old 11-11-2010, 01:24 AM   #9
Mom2mitokids
DIS Veteran
 
Mom2mitokids's Avatar
 
Join Date: Jul 2010
Location: So. Cal
Posts: 1,583

Hi and welcome to the Disboards. You are one special person to adopt all these precious kiddos. I also have 5 kids. Two that qualifies for a wish. My little one did a Disney World wish trip in 08. I would think GKTW would be booked by now, but who knows. We chose to go in March. We are actually extending our trip by 4 days. My kids will be going on independent study one week and then the following week will be there Spring break. We will be coming home on a Wed. so the kids will have 4 days to do all the homework.
__________________
Kris.. Mommy to 5 kiddos...
Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

http://www.facebook.com/HopeforKylee
Mom2mitokids is offline   Reply With Quote
Old 11-11-2010, 08:52 PM   #10
HeatherSP
Mouseketeer
 
HeatherSP's Avatar
 
Join Date: Nov 2010
Location: VA
Posts: 218

Visit with the volunteers

The volunteers came today to get some info and ask Lhea what her wish is. They were wonderful and even brought Lhea a Barbie. It is awesome and it even has Make A Wish written on the doll's dress! They talked about GKTW and had us go ahead and sign the paperwork. We are excited already!


Last edited by HeatherSP; 04-12-2011 at 12:17 PM.
HeatherSP is offline   Reply With Quote
Old 11-11-2010, 08:57 PM   #11
HeatherSP
Mouseketeer
 
HeatherSP's Avatar
 
Join Date: Nov 2010
Location: VA
Posts: 218

Quote:
Originally Posted by Loodlow View Post
Subscribing to watch your beautiful family adventure through this magical time!
Thanks! I look forward to getting to know you

Quote:
Originally Posted by Mom2mitokids View Post
Hi and welcome to the Disboards. You are one special person to adopt all these precious kiddos. I also have 5 kids. Two that qualifies for a wish. My little one did a Disney World wish trip in 08. I would think GKTW would be booked by now, but who knows. We chose to go in March. We are actually extending our trip by 4 days. My kids will be going on independent study one week and then the following week will be there Spring break. We will be coming home on a Wed. so the kids will have 4 days to do all the homework.
Thanks! I am very blessed to have been able to bring these little girls into my life.
I asked tonight about when we could go on our trip and the volunteer said that she didn't think it was too late in the year to go at christmas. I went ahead and told her that if christmas didn't work out that our second choice would be the week before easter when the kids are out of school.
HeatherSP is offline   Reply With Quote
Old 11-12-2010, 05:06 PM   #12
ms_mckenna
DIS Veteran
 
ms_mckenna's Avatar
 
Join Date: Oct 2006
Posts: 1,736

What a beautiful family you have! <3 So glad you pmed me! I hope the ATC stuff I sent you back will help I bet your little ones are going to have a wonderful trip.
__________________
me (36)DH (40)DD (17)DS (15) DS (4) DS (3)DS (2)DD (2) November 2006 ~ Dolphin Thanks Kidds Kids ! 7/30 to 8/06 2007 ~ Bday at BC
ms_mckenna is offline   Reply With Quote
Old 11-13-2010, 07:16 AM   #13
HeatherSP
Mouseketeer
 
HeatherSP's Avatar
 
Join Date: Nov 2010
Location: VA
Posts: 218

Quote:
Originally Posted by ms_mckenna View Post
What a beautiful family you have! <3 So glad you pmed me! I hope the ATC stuff I sent you back will help I bet your little ones are going to have a wonderful trip.
Thanks so much! You are very helpful!
HeatherSP is offline   Reply With Quote
Old 11-13-2010, 07:19 AM   #14
HeatherSP
Mouseketeer
 
HeatherSP's Avatar
 
Join Date: Nov 2010
Location: VA
Posts: 218

Does anyone know what you are allowed to bring inside the disney parks? Will they allow food? Is there a limit on how much?
I live near Busch Gardens in VA and they will only allow a small snack for kids under 2 so we have to leave everything in the car and leave to eat if we don't buy the very expensive food inside. Do you all bring back packs in? What things do you suggest we bring inside?
HeatherSP is offline   Reply With Quote
Old 11-13-2010, 07:31 AM   #15
HeatherSP
Mouseketeer
 
HeatherSP's Avatar
 
Join Date: Nov 2010
Location: VA
Posts: 218

what does she have

Lhea has a disease called LangerhansCell Histiocytosis. Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. The disease can range from limited involvement that spontaneously regresses to progressive multi-organ involvement that can be chronic and debilitating. In some cases, the disease can be life-threatening.In Lhea's case she had skin, lymph system, lung and probable bone marrow involvement. Her docotor tells me that when she met Lhea that her neck was litterally swollen to the size of her head because of the lymph nodes. Because of her birth parents lack of care the disease spread quickly. When she came to my home we were told that no one knew if she would live or not but that the doctors knew she had a much better shot if she was given her medications and chemo treatments. After an additional 6 months of treatment (for a total of 16 months) and a lot of love and prayers Lhea's disease is in remission. Her doctors now say that she has a 60% chance of keeping it in remission.

It is approximated that histiocytosis affects 1 in 200,000 children born each year in the United States. This illness is so rare, there is little research into its cause and treatment, and it is considered an "orphan disease," meaning it strikes too few people to generate government-supported research. I am thrilled to have met up with some other families online who have children with the same disease. My2girlsrock (Taylor) is one of the families I found through facebook and is also on this board too. I am thrilled to meet these families (even if it is just online) especially since it is so rare.
HeatherSP is offline   Reply With Quote
Reply



Thread Tools
Display Modes Rate This Thread
Rate This Thread:

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

facebooktwitterpinterestgoogle plusyoutubeDIS Updates
GET OUR DIS UPDATES DELIVERED BY EMAIL



All times are GMT -5. The time now is 04:02 AM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.

Copyright © 1997-2014, Werner Technologies, LLC. All Rights Reserved.

You Rated this Thread: