Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 I have been trying to get my son his wish granted, but his genetics doctor won't sign the form! I would definitely try one of the other docs...MAW doesn't care who signs it. Also you might inform your genetics doc that MAW is trying to change their image and they no longer just grant wishes for children with terminal illnesses...but children with chronic illnesses which surely he has. MAW doesn't care a bit about which doc signs it so I would check with his more agreeable one. Our neuro signed ours. deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.debwells.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Congratulations Kim! That is so exciting! I have been trying to get my son his wish granted, but his genetics doctor won't sign the form! He has Cyclic Vomiting Syndrome, (among other things) and if he doesn't get to the hospital immediately for IV hydration, he'll die. One time, before I realized what his condition was, I let him go for four days, and when I finally came to my senses and put him in the ER, his blood PH was 7.3. Death occurs at 6.8. We darn near lost him. I don't know what the doctor is thinking by not signing, but I'm determined as ever to get my son his Disney wish trip! Devin has a whole team of doctors, and if this one won't sign, then surely someone else will. Out of curiosity, what is the girls' wish? e *Ü* wishes granted Hello all. I hope you had a very happy holiday. We received a late Christmas present today when Make-A-Wish called to let us know and Lindsey have been granted wishes. We are very excited for them! Blessings, Kim - Mom to and Lindsey (3) Partial Complex I Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Oh, thanks Deb. I had no idea it wasn't for terminally ill children only. Devin definately has a chronic illness! I spoke to our regular ped, and she said that if this Genetics doctor didn't agree to sign after another try with a package of lab reports put together, then she would contact MAW and see what their criteria is, and sign it herself. e *Ü* Re: wishes granted I have been trying to get my son his wish granted, but his genetics doctor won't sign the form! I would definitely try one of the other docs...MAW doesn't care who signs it. Also you might inform your genetics doc that MAW is trying to change their image and they no longer just grant wishes for children with terminal illnesses...but children with chronic illnesses which surely he has. MAW doesn't care a bit about which doc signs it so I would check with his more agreeable one. Our neuro signed ours. deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.debwells.com/Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 I was wondering about this,,do you know what kinds of illnesses MAW qualifies on ? Logan has been "officially" dx with failure to thrive,possible cerebral palsy,hypotonia,pectus excavatum,static ecephalopathy,and juvenile arthritis. He also carries the possible dx of mitochondrial disease,possible myopathy and/or a possible connective tissue disorder. I don't want to get a wish,if we don't qualify for it,,but on the other hand,I am so scared that he has something progressive,,and by the time he is dx,he will be wheelchair bound. As it is,he can't ride his new bike (with training wheels) that we got him for Christmas,for more than 5 minutes,because his legs get too tired,,but he used to be able to ride his tricycle with no problem. What do you think ? Also,Katelyn has bipolar and OCD,,and while it isn't really a life threatening illness,,it sure is life changing ! Kim I don't think MAW cares that much about diagnoses as much as if the dr signed the form or not. They are just office people and vollunteers who don't have medical training so they aren't going to be as intense as you expect. Its all going to depend on if the dr says its a chronic/lifethreatening condition. Our littlest one has mild cerebral palsy...they told us she qualified by diagnosis...but she is so mild you can't even tell. (Her issues are bladder and eye muscle,,,spacicity only in her calves and a few other mild things--but most people think she is a normal three year old) So we told them we werent' interested in doing a wish for her when they told us. Our six year old is our biggest challenge...he has high functioning autism...but so far they dont' identify mental health issues as wish-worthy. In our case. hopefully Gaige will accomplish close to what his peers always do and certainly isn't going to have any kind of shortened life expectancy so it doens't bother me that they dont' recognize it. deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.debwells.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Also you might inform your genetics doc that MAW is trying to change their image and they no longer just grant wishes for children with terminal illnesses...but children with chronic illnesses which surely he has. Darla, I was wondering about this,,do you know what kinds of illnesses MAW qualifies on ? Logan has been "officially" dx with failure to thrive,possible cerebral palsy,hypotonia,pectus excavatum,static ecephalopathy,and juvenile arthritis. He also carries the possible dx of mitochondrial disease,possible myopathy and/or a possible connective tissue disorder. I don't want to get a wish,if we don't qualify for it,,but on the other hand,I am so scared that he has something progressive,,and by the time he is dx,he will be wheelchair bound. As it is,he can't ride his new bike (with training wheels) that we got him for Christmas,for more than 5 minutes,because his legs get too tired,,but he used to be able to ride his tricycle with no problem. What do you think ? Also,Katelyn has bipolar and OCD,,and while it isn't really a life threatening illness,,it sure is life changing ! Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 zachs is life threatening, but it has a good prognosis. Yet we find zachs immune system weakinging leaving him more suseptible to pneumonias which in fact are more dangerous for him. I think from what i gather is u dont need a fatal disease , yet children living w/ a life threatening ailment. I bet logan would qualify. See we can afford trips to disney etc so we had to think long and hard what zach wanted. He can't relay himself a s well to express what he wants. I gave him some options and he chose one which in the long run is something that we wouldnt have been able to get for him that will make his life more fun and more independant. He is getting an adaptive playground. For the back yard so he doesnt have to struggle w/ the ones we have and i dont have to stand right behind him as much. He gets it this spring/summer if we have a place to put it we're building a house well been building permits for the last year to build the house. Atleast we have land to put the swing set on:) Kim wrote: Also you might inform your genetics doc that MAW is trying to change their image and they no longer just grant wishes for children with terminal illnesses...but children with chronic illnesses which surely he has. Darla, I was wondering about this,,do you know what kinds of illnesses MAW qualifies on ? Logan has been "officially" dx with failure to thrive,possible cerebral palsy,hypotonia,pectus excavatum,static ecephalopathy,and juvenile arthritis. He also carries the possible dx of mitochondrial disease,possible myopathy and/or a possible connective tissue disorder. I don't want to get a wish,if we don't qualify for it,,but on the other hand,I am so scared that he has something progressive,,and by the time he is dx,he will be wheelchair bound. As it is,he can't ride his new bike (with training wheels) that we got him for Christmas,for more than 5 minutes,because his legs get too tired,,but he used to be able to ride his tricycle with no problem. What do you think ? Also,Katelyn has bipolar and OCD,,and while it isn't really a life threatening illness,,it sure is life changing ! Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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