Make A Wish Email Campaign for Emily
March 25, 2010 at 7:16 am
[B][COLOR=”Blue”]I realize this is not the purpose of the Foundation Forum, but I can’t resist this request and ask that you humor my lapse of decorum.
Many of you have read theads and responses by “Emily’s Mom”. I recently found out that Emily has a wish to stay in Cinderella’s castle and that Michigan’s Make A Wish foundation has denied Emily’s wish. So I decided to see if I could get an email campaign started to Michigan’s Make A Wish foundation to see if could get Emily’s wish some traction.
So Forum Family would you please join me in the e-mail campaign to the Make A Wish Foundation to see if we can get Emily’s wish granted? I included the body of the e-mail I sent to them below for a suggestion of what you might want to say. [/COLOR][/B]
The Michigan Make A Wish website is:
Michigan’s Make A Wish foundation’s email address is:
I would also ask that you send a separate email to the national Make A Wish foundation and your local Make A Wish foundation. (It couldn’t hurt).
And since money talks in this country, you might consider sending a small donation “in honor of Emily/Kelly” as well. The website has the details on how to do this.
Thank you my friends. This is for Emily’s wish …
I have a neurological condition called Chronic Inflamatory Demyelinating Polyneuropathy (CIDP). Basically it is a rare life threatening auto-immune system disorder where some of my antibodies attack my nerves. I have joined the GBS/CIDP Foundation International and regularly participate in the discussion forums. Through those forums I have met several people who have CIDP and their caregivers. One of these caregivers is Kelly who lives in Michigan. Kelly is the mother of Emily. Emily is an 8 year old with CIDP. She was diagnosed at age 4 w/cranial nerve involvement & right eye paralysis. She is currently undergoing treatments of 20 grams of IVIG every 3 weeks. Kelly is an enigma on the GBS/CIDP forum; seeking wise counsel and support as she cares for her ill daughter, but more often giving wise counsel and supporting those newly diagnosed or struggling with failing health by listening and sharing sound advise and caution through what she’s learned along Emily’s journey.
One of my nephews in Richardson, Tx just had his wish granted and it made me think of Emily. CIDP is a horrible disease. I can’t imagine how tough it would be for a little girl and her mom. I would like to do what I can to brighten at least one day for this little girl and her courageous mom.
Kelly has tried unsuccessfully to nominate Emily for a Wish in Michigan, but she was denied twice (see Kelly’s response below to my query regarding whether Emily had been on a Wish.)
I write all this to ask if there something that can done to help make Emily’s wish for a stay at the Cinderella Castle in Florida come true? I realize Make A Wish has a form to nominate children, but I have not asked for Kelly’s personal information (last name, address, phone number, etc.) so I cannot fill out a form. But I will make sure a form is completed if there is a chance we can offer her some hope/encouragement. I am starting a Emily’s Wish campaign on the GBS/CIDP Foundation discussion forum, so you may begin receiving many similar notes from the GBS/CIDP Foundation family.
I was told that the cost of a wish averages $7000. My wife and I will make a $35 donation to the Michigan Make A Wish foundation today in Emily’s and Kelly’s names and hopefully it will go towards making Emily’s wish come true. My hope is that 200 other people will join me in making a $35 donation as well.
I have written a similar e-mail to the Gulf Coast Make A Wish foundation chapter to see if they could help make Emily’s Wish come true. The Gulf Coast chapter CEO said she would forwarded it to the National Event Coordinator, so don’t be surprised if you hear about Emily from them as well.
Thank you for perhaps re-considering granting the wish of a special little girl with a life threatening illness and her mom.
AnonymousMarch 25, 2010 at 12:01 pm
I applaud your effort on Emily’s behalf; I truly hope you are successful.
As someone who has been involved with Make-a-Wish for over twenty five years, I wanted to mention a couple of things: First…criteria. MAW’s criteria states that children nominated must be between 2 1/2 and 18 and have a “life-threatening” illness. I would imagine this is partially responsible for their “denial”. While CIDP is a horrible illness, and is no-doubt effecting her “quality of life”, a doctor or specialist would, I imagine, have to certify that it is threatening her life. The other thing is, basically, demand. MAW receives MILLIONS of requests every year, and, obviously, can’t support every request. While we all wish we could, it simply can’t happen because of limited resources.
I AM NOT speaking for MAW, and am in no way authorized to speak for them, but as I said, I’ve been involved since “almost” their inception, and wanted to offer a little perspective. I became involved when my cousin’s daughter, Sara, was born with Spinal Muscular Atrophy. “Most” children born with that horrible disease do not live to see their first birthday; Sara lived to age 16!! She is, I believe, the longest living patient known to be born with SMA, in history. MAW granted her wish, and it was a wonderful experience for her and her family. After that, I chose to stay involved, helping on many different levels in my local community with fund-raisers, etc. It is a WONDERFUL organization.
As I said, I truly hope and pray you can get the results you’re looking for; I will send an e-mail, as will my wife, in support of your effort. I will also make a suggestion: I would support, as I believe others here and elsewhere would, an effort to grant Emily’s wish, seperate from MAW. If such an effort were started, my wife and I would donate $100. I cannot imagine ANY child having to suffer the effects of CIDP. [B][I]There is a ministry opportunity for you, Gary[/I][/B]…start a foundation, or get someone else to start a foundation, to support children and their families who have many of the neuropathic disorders that aren’t “well-known”. We all know about MDA; look at what an effect one man’s effort has had on that. What about the hundreds of other neurological disorders that disrupt children’s lives, keeping them from having the same childhood experiences others enjoy?
Emily, and this effort, are in our prayers! Good luck, and please keep us posted on how we can help.
March 25, 2010 at 12:05 pm
Great idea!! I want Emily to go on a wish too! Kevies school is doing a fundraiser for Make a Wish to try to get someone a wish from our neighborhood. I spoke w/the girl that helped us when we got our wish and explained to her about Emily and what happened. She assured me that the criteria is the same everywhere that the doc must have not filled something out right. So you have to help me convince Kelly to get the courage to approach her doc again. I know she does not want to go through the disappointment again! we have to get her courage up!! Any chance you can help me work on that, how about adding her to your prayer chain at Church for courage. It is so nice that you are helping Emily!!
March 25, 2010 at 4:16 pm
Gary, what a thoughtful and great idea. I am going to join the e-mail campaign and send a donation. I am going to trust that our prayers will be answered and that Emily will get her wish.
AnonymousMarch 25, 2010 at 5:42 pm
I’m just wondering if you’ve tried other organizations besides Make A Wish?? I know there’s THE RAINBOW CONNECTION.
If one of these organizations grants Emily’s wish then you can apply to GIVE THE KIDS THE WORLD village located in central Florida. You and Emily would then be able to stay there at no cost. A wish granting organization HAS to grant a wish first. I do know Emily wants to stay in Cinderella’s Castle but if you also stayed at Give The Kids The World, you could stay longer for more DisneyWorld.
March 26, 2010 at 10:36 am
Great though Rhonda. A human interest story?
I wrote an email yesterday to the “volunteer” coordinator of the Miracle Mile in Charlotte yesterday to see if they could generate some media interest there, but that’s a long way from Michigan. (I’m thinking of wearing an “Emily’s Wish” t-shirt for the event.) I haven’t heard back yet, but the brochure advertises a local reporter celeb. I think I’ll see if I contact her and see if they have an interest.
We must be careful and respect Kelly’s desire for anonymity for Emily. So let’s make sure she authorizes any publicity that could in any way identify them.
My plan is to just say “Emily is a young girl with this horrible disease who has a wish to go to Disneyland and spend the night in Cinderella’s castle. There’s a lot of us who desire to see that wish come true and we’re hoping Make A Wish will make it come true.”
What do you think?
AnonymousMarch 27, 2010 at 11:47 am
I think that this is an admirable spirit and hope for Emily, but I would like to suggest that Make-a-Wish may not be the best organization to approach. Make-a-Wish officially says that children eligible have to have “life-threatening medical conditions” and that the conditions have to be “progressive, degenerative, or malignant conditions that have placed a child’s life in jeopardy”. As a physician of children with cancer, I have filled out a lot of these forms over many years for several “Wish” organizations. Some “Wish” Organizations used to say that a child had to have a significant risk of not reaching his/her 18th birthday. CIDP, terrible as it is, is not considered to be a life-threatening illness–it is quality of life threatening. In reading what Kelly has written, the sticking point for Emily to get a “wish” is her neurologist. I also have been in the tough situation of not “certifying” an ill child to be eligible for a “wish” for Make-a-Wish because what that child had did not met the criteria of life-threatening listed for that organization and “life-threatening” IS different from chronic or debilitating. There are tens of thousands of wish requests a year. Make-a-Wish says they grant a wish every 40 minutes which means about 13,000 wishes a year (if I did the math right). Kelly says that it can take up to a year to get the wish, because they have to get funding for and arrange each wish and kids that are dying HAVE to jump to the top of the list at times or they would never get theirs. There are different interpretations of eligibility, so several “wish” organizations have changed their criteria to have the same wording as Make-a-Wish to help make it clearer.
What I might gently suggest is to look at other “wish organizations”–there are hundreds throughout the country to find ones that permit chronic medical conditions or debilitating medical conditions that are not also “life-threatening”. You can even google “wish organizations” to get some of these. Look at the criteria to see the wording and make sure that the medical condition of the child does not have to be “life-threatening”.
Please know that I understand very well that something does not have to be “life-threatening” to have a tremendous impact on the child and family and that some physicians either do not read the fine print or chose to ignore it and sign despite the criteria of “life-threatening” as well as some organizations have different eligibility. I am not trying to throw water on these efforts, but just to say that Make-a-Wish requires a physician to sign that something is “life-threatening” and no amount of appeals to Make-a-Wish will make the wish happen if a physician will not sign the form that the condition is “life-threatening”. As a physician working with really ill children, I chose to be honest and accurate in answering this even if occassionally a child I really, really want to have a wish cannot get one through that organization. Please check into other organizations or ask if there is another way to get this wish to happen. Some require only chronic illness not that the condition is life-threatening. One is “Dream” something. There may also be ways for sponsors to step up so that a child gets a wish experience.
AnonymousMarch 28, 2010 at 1:22 am
I have thought about this all through this day and just wanted to say two other things that are important to remember. First, that not being eligible for a wish from Make-a-Wish also has a good side–that what a child has is not life-threatening. Each time I fill out one of these forms, I know that some of the children will not live to grow up and when I have to explain why someone is not eligible–it is to say that what they have is very, very unlikely to kill them. I am glad to say that. It is disappointing to the child, but, in the great arena of life–what a good thing it is really.
Second, that it would really be great if everyone had a chance for some dream, over-the-top wonderful experience to happen to them especially those children that lose a lot of their childhood fighting illness. We heartily support “wish”foundations because this touches something in so many of us and also “wish” foundations typically also honor the whole family not just the ill child. I think this is why there are quite a number of wish foundations and that chronically ill children also are specifically eligible in some. Being “life-threatening” is terrible, but the families in which the lives of all center around treatment of a very serious illness also benefit greatly from a time of joy and togetherness in which coping with the day-to-day is put aside for dreams.
Just some things to think about. WithHope
March 28, 2010 at 9:45 am
First of all, thank you all for your passion and support. This Foundation Family is awesome! 😀
Withhope, Thank you for sharing your experience and wise counsel. You really are a caring and very special person. I will explore other avenues, I just don’t know what they are. Make A Wish was my first thought because of my nephew’s experience and they are well publicized and well known. So I’ll plan on spending some time on the web lookin’. If anyone out there knows of other wish groups, please help us out with possible leads.
Liz, thanks for exploring Deliver the Dream. With all our resources, I feel sure the right organization is out there and we’ll be able to make the right connection.
AnonymousMarch 28, 2010 at 11:08 am
I did a google search by putting in WISH GRANTING ORGANIZATIONS FOR CHRONICALLY ILL CHILDREN;
DREAM FACTORY sounds very good, but people do check to be sure it’s legit. I think DREAM FACTORY has locations in different cities but what is good is DREAM FACTORY will grant wishes when places like MAKE A WISH refuse. DREAM FACTORY is partnered with American Airlines.
There is also STARLIGHT CHILDREN’S FOUNDATION someone could check out.
And you can use KINDER START search engine for a list that will grant wishes for chronically ill kids.
AnonymousMarch 28, 2010 at 2:52 pm
I also searched using “wish organizations” and “Michigan” and got those two (that I have heard about before) and the Sunshine Foundation (which sounds familiar, but I am not sure) and the “Granted Wish Foundation” that I have not ever heard about before. Starlight is a great foundation and does a lot to help hospitalized kids–with video games and websites for kids to talk together about their illness–as many of these are very rare and only a couple to a few cases a year in any state). I think Starlight and the Dream Factory are probably the best to start with and to check further into the other two as back-up, if needed. A kid can only get one wish from one “wish organization” and they do everything they can to make it a wish of a lifetime by making it really special and optomizing the experience for each child–for example, if a child cannot walk far, to find the best way for the experience to not be too tiring.
March 29, 2010 at 3:13 pm
I put Emily and Kelly on our prayer chain at Church yesterday. Emily (for her wish to be realized) and Kelly (for encouragement and strength).
After Church a dear lady walked over to me handed me $10 “for Emily’s dream”. This is not a wealthy lady so that $10 was significant. She has 3 grown daughters of her own and now granddaughters. Wow! I was awed and inspired by this demonstration of Christ’s caring and generousity being put into practice.
So Kelly know that you and Emily are being prayed for and loved on by some really special people.
And there is $10 in Emily’s wish jar…
AnonymousMarch 29, 2010 at 7:13 pm
Gary – Once again I am speechless! The kindness that has been shown to me recently is so very overwhelming. I’m thinking Emily needs to draw a picture for that lady at church. I’m hoping we can figure out a way to get that to her.
Thank you again for all that you are taking on with this.
AnonymousMarch 29, 2010 at 7:16 pm
Liz – I can try to reach them. Unfortunately I have a sinus infection & my ear drum is bulging (it’s SO not fun!) so it will have to wait until I am better. I’ve actually been in a pretty bad mood lately because of it. I don’t think I’m fit to be talking on the phone with strangers.
Thanks for looking into it for me.
April 4, 2010 at 9:15 pm
I heard from Make A Wish: Encouraging news from my perspective. 🙂 Seems to depend upon the neuro or doc for the most part. Maybe we need a mail in campaign to Emily’s neuro? :rolleyes: The Make A Wish letter text follows …
Mr. GaryO Houston,
Thank you for contacting the Make-A- Wish Foundation® with your Questions about eligibility. Born in 1980 when a group of caring volunteers helped a young boy fulfill his dream of becoming a police officer, the Foundation is now the largest wish-granting charity in the world, with 65 chapters in the United States and its territories. With the help of generous donors and more than 25,000 volunteers, the Make-A- Wish Foundation grants a wish every 40 minutes and has granted more than 185,000 wishes in the U.S. since inception. As you may already know from perusing our web site, the Make-A-Wish Foundation has a mission to grant wishes to children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy. The Foundation can grant only the one true, heartfelt wish to children who meet these two preliminary criteria: (1) children who have reached the age of 2-Yz and are under the age of 18, and (2) have been diagnosed with a life-threatening medical condition by an attending medical professional. These eligibility criteria do not vary from chapter to chapter, but rather have been created with the input of medical professionals to be utilized uniformly across the country. We rely entirely on the expertise of each child’s medical professional to determine medical eligibility based on the child’s diagnosis, prognosis, treatment protocol, response to treatment, and medical history. Because of this, individuals with the same medical diagnosis may have differing outcomes with regard to eligibility. It is not the disease or condition itself that makes a child eligible, but rather the doctor’s determination that, at the time of referral, the
condition is placing the child’s life in jeopardy.
There are a wide variety of wish granting organizations serving the United States, and each organization’s service population and territory varies. A search for “wish granting organization” along with the name of Emily’s community online may return a variety of results to begin your search.
Thank you again for your interest! We wish you all the best!
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