Info for a friend please

[jessesgirl]

I have a friend at church that has a 18 year old 16 year old and has adopted 1 year old twins (will be two in october and she has had them since birth) One of the twins is VERY ill, they are not even sure he will make it. He has seizures constantly and they are causing him to loose alot of function and life skills, he can not eat he has a feeding tube in his belly button, he has a trech and multiple monitors. They are wanting to take the family to Disney b4 their oldest son graduates and goes to Preacher school as this my be the last time they get a chance for a family vacation. How would i go about helping them make this happen? Are there any orginzations that can help us out ? The main concerns are travel and nursing . Thank you in advance .

 

[sherabby]

Could Make-A-Wish Help?

 

[SueM in MN]

Could Make-A-Wish Help?

That's what I would suggest too.

 

[PrincessAndrea'sMom]

Hello there. I have a trached one year old. We had a successful family trip this past November when my baby was 8 months old. While my daughter does not have the problems your friend's child has, it was not that difficult and we all had a great time.

My daughter has an airway disorder and will have reconstruction in October(fingers crossed , then hopefully no more trach for her by January. Our family had a very difficult spring and summer last year with her in three different hospitals and several surgerys. It would be great for that family to just have so time to have fun!

When we went, she had two different monitors, a suction machine and a emergency bag. We took her in a big stoller and stuffed all the equipment under the stroller. The trip was great! My biggest worry was about the flight down, but she slept the whole time both ways.

If your friend has any questions, please feel free to PM me and I can give her more details of our experience. I hope this helps!

Oh, and I believe the child must be 3 to get a wish trip, that is what I have heard from other families I have meet.

 

[Eeyore5]

I worked with a student who got a wish trip at about a year. She was terminally ill. Check with your local wish organizations. They may be willing to work with your friend.

 

[dclfun]

MAW does have a requirement that a child be 3 years old, but there may be other "wish" organizations that could help. The reason for the age limitation is that it's supposed to be the child's wish- in this case with this baby being so young and ill I doubt he/she would be thinking about a vacation or a wish for him/herself.---Kathy

 

[Eeyore5]

They went through make a wish. The website says 2 1/2 but they made an exception for her. She had a severe degenerative terminal illness. She passed away at 15 months. They sent her at about 11 months, before the disease was impacting her too much to go. I am not sure if they will make an exception in this case though. The little one I worked with had a diagnosis that was 100% terminal before 2 years. Try doing a search for your state and wish organizations. There are a few different wish organizations out there. Different organizations have different rules and focuses.

 

[dclfun]

I do have to say....would this be the best option for them now as a family with a child who has constant seizures, is on various monitors and is losing function? What kind of enjoyment would this baby get from being in a theme park environment exposed to many guests, germs, away from a familiar setting? Would it even be advisable to travel anywhere? I can understand the need for family bonding, but really...would this trip be *this* child's wish? It sounds like the vacation is more for the child who is graduating. In this case, is there respite care for the ill twin that would allow the rest of them to go on a celebratory trip? Would the parents feel comfortable enough to leave this child at home with a nurse caregiver? Would your church help the family in this way? Just throwing out some thoughts.---Kathy

 

[cm8]

I do have to say....would this be the best option for them now as a family with a child who has constant seizures, is on various monitors and is losing function? What kind of enjoyment would this baby get from being in a theme park environment exposed to many guests, germs, away from a familiar setting? Would it even be advisable to travel anywhere? I can understand the need for family bonding, but really...would this trip be *this* child's wish? It sounds like the vacation is more for the child who is graduating. In this case, is there respite care for the ill twin that would allow the rest of them to go on a celebratory trip? Would the parents feel comfortable enough to leave this child at home with a nurse caregiver? Would your church help the family in this way? Just throwing out some thoughts.---Kathy

agreed, I hope that what ever they decide, everything works out for them