Re: wishes/how to submitt MAW request?-Kim

[Guest guest]

Thank You!

I am going to get started right away! I know Sydnie would love a play room. She has sooooo many sensory needs and It would be wonderful to give her an "outside" play area without it being outside. Hope all goes well for ya'll! Keep me posted!

Thanks again!

StephKim Novy wrote:

Steph,

Sydnie sounds just like my twins, and Lindsey. They were just granted wishes this past week and we are also asking for a playroom for them in our basement. They are also not able to go outside a lot due to seizures and heat intolerance. I called MAW and got the ball rolling. They in turn faxed a form to our pediatrician and she had to state that the girls were medically eligible. The whole process took less than 3 weeks (during the holiday season to boot...) We are supposed to get a call in the next week to set up a time to meet with someone. Our girls also cannot express their wish so this is what we have come up with that we think they could use/would enjoy the most right now.

Check your phone book for the local MAW chapter or I think you can go online too. Good luck and I hope Sydnie gets her wish soon!

Kim - Mom to Luaren and Lindsey (3) Partial Complex I

Re: wishes granted>> 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>> __________________________________________________>

[Guest guest]

Thank You!

I am going to get started right away! I know Sydnie would love a play room. She has sooooo many sensory needs and It would be wonderful to give her an "outside" play area without it being outside. Hope all goes well for ya'll! Keep me posted!

Thanks again!

StephKim Novy wrote:

Steph,

Sydnie sounds just like my twins, and Lindsey. They were just granted wishes this past week and we are also asking for a playroom for them in our basement. They are also not able to go outside a lot due to seizures and heat intolerance. I called MAW and got the ball rolling. They in turn faxed a form to our pediatrician and she had to state that the girls were medically eligible. The whole process took less than 3 weeks (during the holiday season to boot...) We are supposed to get a call in the next week to set up a time to meet with someone. Our girls also cannot express their wish so this is what we have come up with that we think they could use/would enjoy the most right now.

Check your phone book for the local MAW chapter or I think you can go online too. Good luck and I hope Sydnie gets her wish soon!

Kim - Mom to Luaren and Lindsey (3) Partial Complex I

Re: wishes granted>> 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>> __________________________________________________>