My school councilor has suggested maybe thinking about "make a wish foundation.." I looked at him in shock.. I have only been dealing with serve pain for the last half year. In and out of the hospital but I don't think it's that bad to have a wish granted. I have been out of school for about a half of year... Then brought up that I have been suffering my whole life.. When I was 3 years old I couldn't speak and had special needs according to the doctors. They said I probably would be in a special need class for the rest of my school years, but I showed them wrong and now In high school I have a 3.7 grade point average and in all normal classes. The only thing I wish I didn't have was my hearing loss. I have to wear hearing aids constantly. They said I probably would be deaf when I was older. That was until recently when I was told my hearing was caused from birth from Chiari. I also had reports from my primary doctor saying I've complained about Headaches over the years. That was until recently I had serve headaches, ones that never went away. Pain in the back of the neck that feels like someone is stabbing me all the time. I slowly feel like I am fading away in reality, because I am unable to do thing without being in so much pain. Recently I've almost gone deaf in one ear...
No medicine helps, they even gave me morphine and I was still in pain but soon feel asleep... and I ended up in the ER over 15 times. Have been admitted for 3 days... Have been to over 100 doctor visits in the last 4 months. Really my only hope is Surgery and my current doctor is holding a meeting on the 27th of this month with a bunch of other surgern. They said they've never seen a chiari case this bad that has progressed so quickly.
I am not sure about "make a wish foundation" I really think my parents deserve it more then I do, because they been there for everything. They have to pay for the bills for making me feel better, they were there when I was in so much pain.
That was a really great reply Beeba. She is right. Go for it. Make your wish! So that when you have overcome this like everything else, you can enjoy your life for a change. It will give you something really wonderful to look forward to! As a parent, I would do anything within my power to make my son healthy and happy. It is not a job nor is it a burden....it is just what we are meant to do as parents.
Hi Sydney, I am sorry to hear that you have suffered so much. I hope you do get some answers and some relief soon.
Regarding Make-A-Wish, the nice thing about it is that I think the families are usually involved, so when you say that "your parents deserve it more than you do" they should be included so it will be a nice wish granted for all of you. You sound like such a super young lady and wise beyond your years!
One thing I have been shocked and overwhelmed with since I made the decision to have surgery (and then just had it last week) is how much people LOVE to help in times of others' needs. I think if you find that you let your school help you with this wonderful gift, they will get just as much out of it as you will. Just be still and let people love you. :)
You are a really great teenage girl. I can tell that from just how you describe your parents.
Make a Wish isn't just for the terminal. It is also for those who have had to fight a disease for their health. I think that would put you into that category. I have a friend who just went to the Great Barrier Reef with her parents, just two weeks ago for her Wish. She has had two bouts of non-Hodgkin's lymphoma within three years. Today she is doing great and will be forever grateful for the gift. The first time she had it, they turned down the trip, stating others need it more. This last time she was in treatment again, the local Make A Wish representative came to her parents home and said "we are not asking this time, we are telling you that we will be granting your wish".
Submit your wish Sydney, this special time with your parents would be something to treasure.
Not to be a party pooper but, for Make-a-Wish, per their web site...
A child with a life-threatening medical condition who has reached the age of 2½ and is under the age of 18 at the time of referral, is potentially eligible for a wish.
After a child is referred to the Make-A-Wish Foundation®, the Foundation will contact the child's treating physician to determine whether the child is medically eligible for a wish, based on the medical criteria established by the Make-A-Wish Foundation of America. In addition, a child cannot have received a wish from another wish-granting organization.
Having filled out many of those papers(and being in orlando, seeing many of those kids), unless your chiari is from a tumor, the Chiari diagnosis itself does not meet the make a wish criteria(some MDs may fudge the rules but we are required to document that there is a terminal illness, with death as a risk. Some MDs may be very lenient in the way in which they fill out the paperwork, but if Make a Wish reviews the paperwork, they will probably deny(they have never granted a Wish for any Chiari patient that I'm aware of).
In contra-distinction, recurrent non-Hodgkins lymphoma has an almost 25% 2 year mortality rate. Most survive, but there is a real risk of dying from that disease.
It never hurts to ask. Just read the paperwork and see if you feel that you qualify.
Just throwing this out there - perhaps Sydney’s school has a program that mimics Make A Wish without actually being the same criteria as the national program, and thus something for her and her family to explore? I honestly have no idea, just wanted to keep the dialogue open.
I have a few contacts that I am going to talk to. We might can make a Wish ourselves.... ;-)
Sparkyschick said:
Just throwing this out there - perhaps Sydney's school has a program that mimics Make A Wish without actually being the same criteria as the national program, and thus something for her and her family to explore? I honestly have no idea, just wanted to keep the dialogue open. :)
My step-daughter (not DD who has CM) was granted a wish by Make A Wish Foundation and she is not terminal. Yes it is a chronic disease, yes it is a rare disease (1 in 50,000) but it is not terminal.
This is what was sent to us from Make A Wish about what is considered for granting a wish.
In part it said
"Progressive -- Tending to become more severe or wider in scope. Degenerative -- Of, relating to, causing or characterized by gradual deterioration of specific tissues, cells or organs with corresponding impairment or loss of function, caused by injury, disease or aging. Malignant -- Threatening to life; virulent; tending to metastasize; cancerous"
I did a quick google search and found a lot of kids granted wishes who have CM Type 1.
