Kade's Wish - MAW

[MitoDadMO]

Hello,

My 3yr old son Kade has a number of medical conditions (I will cover them in a minute) and he has medically quallified for a wish from MAW. I spoke with our Wish Granter tonight and they are coming out for our meeting next week to discuss what Kade's wish is. We are hoping for a Disney trip!

Here are the details. At 5mths of age Kade starting having seizures. My wife and I spent three weeks in the hospital with him trying to get his seizures under control. He was diagnosed with Epilepsy, and Hypotonia while in the hospital. A few months later we noticed he was not grabbing at things and keeping eye contact. He was then diagnosed with Cortical Vision Impairment. Kade is non-verbal and cannot situp due to his hypotonia. About a year ago, at the urging of his Neuro, he had a muscle biopsy and has since been diagnosed with a Mitocondrial Depletion Disease. It is believed that this is the underlying issue causing his epilepsy et al.

Annette and I have an older son, Jackson, who is 5 and is a typical crazy 5 year old.

We applied for MAW at the urging of some of Kade's therapists back in November. Thanksgiving week we found out he qualified, and just got our packet last week. I spoke with one of our Granters tonight and we have our meeting next week.

 

[brookerene]

Hi Welcome to the DISBoards.... I've found that everybody here is very helpful and kind. There is a lot of good info from the people here. I hope that things go well with the wish granting. There are some other families on here with children who have mitochondrial diseases, so I'm sure you will find a friend with stories to share!
We are going just before Easter after having to postpone our Oct dates, and I'm hoping spring to be a good time. A lot of people recommended Fall but I hated to wait so long and then miss more school than necessary. Although we will hit high crowds!
I look forward to following your PTR. The people here love photos and stories so you will have a lot to read if you want! Take care, and say hi to Kade and Jackson!

 

[brookerene]

PS I forgot to subcribe to your ptr when I posted so I'm going to now! Take care!

 

[MitoDadMO]

Here is a photo of Jackson and Kade (in wheel chair) with Santa.

 

[kellyw8863]

Hello there! I'm not on here much since my daughter had her wish trip back in April, but as another parent of a kid with mito, I wanted to pop on and say hello! We too were torn between a pool (Ali sweats but has heat intolerance - her GI system shuts down), and Disney. She chose Disney (we're doing the pool ourselves this spring), and we loved every minute of it. You will meet lots of great people here - happy planning!

Kelly

 

[MitoDadMO]

Kelly,

My parents had a pool installed last summer and we spent a lot of time there. Our subdivision does not allow above-ground pools, so I dont know if MAW will be willing to pop for a inground pool. My wife wants a pool for Kade, I think he would enjoy the hustle and bustle of Disney et al.

 

[brookerene]

I think a pool would be awesome, but I have a feeling an inground pool is out of their budget. I know that our MAW chapter doesn't do certain types of building projects. Ours wouldn't do a Rainbow playset, although I know other chapters do...it had to do with their budget and other agreements. We'll cross our fingers....but at least you all have a secondary wish that will be awesome if they can't do the pool..... we look forward to finding out what happens!

 

[billwendy]

Your boys are so CUTE!!!

Please feel free to ask us questions!! We all have various back grounds (Im a pediatric OT) and experiences on MAW trips!!!!

Cant wait to here when you get to go!!!! Keep us up to date!!!

Wendy

 

[hollie1974]

Subbing!

Welcome to the board! I think you will really like it here.

Looking forward to reading about your meeting. Wish granters are an awesome people.

 

[MitoDadMO]

thanks for all your input. i found a ptr for a little girl who is very similar to Kade as far as diagnosis and abilities. We are excited because she was able to do more things than her mom was imagining.

 

[Emilyswish]

Hi there! Just saying Hello since you stopped by my thread. If you get a chance to read my husband's daily reports on our blog (www.wecouldnotaskformore.blogspot.com), you'll get a better idea of all Emily was able to do while we were there, plus pictures. I'll be adding more reports and pictures here too.

Your boys are just adorable!

 

[Mom2mitokids]

Hi there from another mito parent. Since we have the inherited form all my kids have it to some degree. Two of the kids have it the worst and unfortunately my youngest has it the worst out of all of us. It's mainly affecting her GI track. It's shutting down causing us to be in hospital monthly. She was granted a wish in 08 and we went to Disney World. We had so much fun my 2nd daughter chose it for her wish. They both can't tolorate the heat and my youngest doesn't sweat so we are going in March. You can read more on my PTR.

On the pool. MAW can't do inground pools. Only above ground. It's stated in their website. I guess it's the cost and I think I read that anything that needs a permit they can't do.

Can't wait to hear more about your family. The kiddos are cutie pies. BTW...My youngest has complex III and IV.

 

[MitoDadMO]

Have a question about GKTW and lodgeing.

I know that MAW will only pay for the Wish Kid and parents/siblings. The thing is my in-laws watch Kade on a daily basis and we want to include them as well. Does allow GKTW allow visitors etc? I know that my parents will want to make the trip too.

I fully understand that tickets/meals will be on their $, but I just wondered if GKTW would allow us to have visitors since it is such a special place.

 

[billwendy]

Have a question about GKTW and lodgeing.

I know that MAW will only pay for the Wish Kid and parents/siblings. The thing is my in-laws watch Kade on a daily basis and we want to include them as well. Does allow GKTW allow visitors etc? I know that my parents will want to make the trip too.

I fully understand that tickets/meals will be on their $, but I just wondered if GKTW would allow us to have visitors since it is such a special place.

Hi!!! I think that the villa's can hold up to 7 people, but not sure what the qualifications are on who can stay with you. When my DH and I went to help our nephew/cousins, we stayed at the POP Century and drove to GKTW to visit! We were allowed to participate in all the activities as a guest. However, we were only allowed 1 meal and 1 ice cream at the village (this was last April). We were not able to purchase other meals at GKTW, it was a bummer, but it ended up being totally fine. Its such a GREAT PLACE!! And, so easy to get to WdW from there!!

 

[Mom2mitokids]

Have a question about GKTW and lodgeing.

I know that MAW will only pay for the Wish Kid and parents/siblings. The thing is my in-laws watch Kade on a daily basis and we want to include them as well. Does allow GKTW allow visitors etc? I know that my parents will want to make the trip too.

I fully understand that tickets/meals will be on their $, but I just wondered if GKTW would allow us to have visitors since it is such a special place.

You can have up to 7 people stay in the Villa. If they stay with you..they can eat there for free. They will be responsible for airfare and theme park tickets. All you need to do is contact your MAW...or tell them during your visit. I called GKTW about this too, but only for my daughters friend to come with us. This is what they told us.

 

[kellyw8863]

All immediate family members are eligible to stay at GKTW for free. We wanted to bring the grandparents as part of Ali's wish and while MAW would not pay for them, GKTW welcomed them with open arms. The villa comfortably accommodated us all. The grandparents had the master bedroom, we took the pull-out couch (since we'd be up off and on with the kids anyhow), and the kids took the room with the twin beds. It worked out perfectly.

 

[kailatilear]

I am so glad that Kade is getting his wish. What adorable children you have. I am subscribing now!!!!

 

[MitoDadMO]

It hasnt been granted just yet. we have our meeting with the granters to tell them what kade wants this friday.

 

[tinytreasures]

so glad he is going to get a wish
My Inlaws and sister in law all got to stay with us at GKTW. MAW paid for my inlaws because they are here full time as helper for the kids.

 

[maroo]

Have a question about GKTW and lodgeing.

I know that MAW will only pay for the Wish Kid and parents/siblings. The thing is my in-laws watch Kade on a daily basis and we want to include them as well. Does allow GKTW allow visitors etc? I know that my parents will want to make the trip too.

I fully understand that tickets/meals will be on their $, but I just wondered if GKTW would allow us to have visitors since it is such a special place.

You can have up to 7 people stay in the Villa. If they stay with you..they can eat there for free. They will be responsible for airfare and theme park tickets. All you need to do is contact your MAW...or tell them during your visit. I called GKTW about this too, but only for my daughters friend to come with us. This is what they told us.

Looks like you got your question answered!!

I would ask during your meeting and see what they say. Even if the chapter says no, make sure to ask at GKTW, too.