Amanda Horst, 14 year old daughter of Galen and Patricia has just received the official diagnosis of Restrictive Cardiomyopathy. Doctors are recommending a heart transplant as soon as possible which would have to be done at Toronto Sick Children's Hospital and would require Amanda to be less than 2 hours from the hospital at all times. Galen has a business to run with one employee in addition to his 16 year old son. Their home is about 4 hours from the hospital.
Some significant questions and concerns:
Can they find an affordable place to stay in the city for a family with 7 children?
They currently live on top of a hill out in the country; they have some pigs, chickens, goats, a cow and some ducks. How long could they stand living in the city?
They have 2 or three dogs - the other livestock can be sold but what about the children's pets?
What do they do for church? If Galen drives back and forth every week so he can spend some time in the city with the family they won't be interested in driving 4 hours back for church every week.
What about the sixteen year old son? Does he just work when Galen is at work? What about the employee? Can he continue to work without supervision several days a week?
Where does the money come from to pay for the second home?
Can they leave Amanda in Toronto for brief periods with other volunteers who would keep her company?
They are letting the weekend go by; Amanda is at home and can do thinks like being a big sister to 4 younger sisters; she can wash dishes and help with the younger children's homework. She can't do anything strenuous - she experiences chest pains from over exertion. We will see what happens in the next days and weeks.
Amanda's Journey
-
temporal1
Re: Amanda's Journey
So glad to see this here.
These are important details to know about, to think and pray about.
There has got to be a way.
Does the hospital have suggestions for housing?
They may have social services or something that might help coordinate housing?
(This scenario must repeat and repeat?)
Is this Amanda’s diagnosis? -
Pediatric Cardiomyopathies
https://www.heart.org/en/health-topics/ ... myopathies
Page 92, Today thread:
http://forum.mennonet.com/viewtopic.php ... &start=910
These are important details to know about, to think and pray about.
There has got to be a way.
Does the hospital have suggestions for housing?
They may have social services or something that might help coordinate housing?
(This scenario must repeat and repeat?)
Is this Amanda’s diagnosis? -
Pediatric Cardiomyopathies
https://www.heart.org/en/health-topics/ ... myopathies
Page 92, Today thread:
http://forum.mennonet.com/viewtopic.php ... &start=910
Hats Off wrote:
Amanda, 14 yo daughter of Galen and Patricia officially received a diagnosis of
Restrictive Cardiomyopathy, a rare form of heart muscle disease for which the only proven effective remedy is heart transplantation.“ ..
0 x
-
temporal1
Re: Amanda's Journey
PDF / RESTRICTIVE CARDIOMYOPATHY
https://www.heart.org/-/media/data-impo ... 21B88C4C7E
https://www.heart.org/-/media/data-impo ... 21B88C4C7E
0 x
-
Hats Off
Re: Amanda's Journey
That is the one. We have copied that information.temporal1 wrote:PDF / RESTRICTIVE CARDIOMYOPATHY
https://www.heart.org/-/media/data-impo ... 21B88C4C7E
0 x
Re: Amanda's Journey
May our prayers and God's grace go with you and the rest of the family during this challenging time.
0 x
Try hard not to offend. Try harder not to be offended.
I think I am funnier than I really am.
I think I am funnier than I really am.
-
MaxPC
Re: Amanda's Journey
Likewise. I'm glad you started this thread to keep us up to date. I did a little research: here is an idea for inexpensive housing near hospitals. I would investigate if the following option is nearby.Robert wrote:May our prayers and God's grace go with you and the rest of the family during this challenging time.
Ronald McDonald House
I would ask the support counselors at the hospital if there is free or inexpensive housing nearby for the duration of her stay. If there's no opening, is there a nearby fellowship with people willing to host the family?
0 x
-
temporal1
Re: Amanda's Journey
You probably have this info, but, just in case:
Sick Kids / Staying at Sick Kids / Nearby Accomodations
http://www.sickkids.ca/skmobile/patient ... index.html
Reading the PDF, reminds, somehow, keeping life as normal as possible is important.
O.my. That’s not asking much!
As i’m thinking and praying, it would seem your family isn’t terribly far away (4 hours) and, they need to have her within 2 hours .. if housing were found within 1-2 hours of the hospital, such that it would be 2-3 hours from home .. this would be optimum? (Thankfully, we’re coming out of winter.)
If there were someone(s) who could come to stay in their home, to try to keep things together, then, maybe 1 parent at a time, and, whichever children needed to go, could be worked out.
At times, “everyone” might need to be present. But, probably not everyone, all the time?
Honestly, i’ve discussed this sort of situation with my daughter.
i.e., my lengthy visits have served to “normalize” my presence. in case of emergency, it would seem “normal” for me to just go there. honestly, for that part, my grdaughter would not bat an eye.
i believe this is a great thing. we did not plan it, but, this is how things have unfolded. i sleep on the sofa or their floor, and i’m thankful to be able to do it.
in my imagination, i’m thinking something similar might work for your family? it’s a matter of “who?” could do that. and, hopefully, someone who could help with the animals, etc.
it would be disruptive to all to try to sell. if possible, i would avoid that thinking at this time.
when Amanda gets better, she might be burdened with awful guilt, that would be sad. hopefully, unnecessary.
i’m remote, in many ways.
i have faith others are “brainstorming” on this, too; very likely in much better ways than i! -
don’t let me be a distraction.
i’m glad the PDF talks about normalcy, and lack of stress, esp for the child, but, also for all involved. this is where faith is priceless. in faith, we can find the way.
during my husband’s terrible illness, i was thankful we were not new in faith, it was the comfort and guidance we knew, and could turn to. and, we most certainly did. because of this, we even experienced joy in the process. (this can seem impossible to explain.) but, it’s real, and, i know you have this in your life.
Sick Kids / Staying at Sick Kids / Nearby Accomodations
http://www.sickkids.ca/skmobile/patient ... index.html
Reading the PDF, reminds, somehow, keeping life as normal as possible is important.
O.my. That’s not asking much!
As i’m thinking and praying, it would seem your family isn’t terribly far away (4 hours) and, they need to have her within 2 hours .. if housing were found within 1-2 hours of the hospital, such that it would be 2-3 hours from home .. this would be optimum? (Thankfully, we’re coming out of winter.)
If there were someone(s) who could come to stay in their home, to try to keep things together, then, maybe 1 parent at a time, and, whichever children needed to go, could be worked out.
At times, “everyone” might need to be present. But, probably not everyone, all the time?
Honestly, i’ve discussed this sort of situation with my daughter.
i.e., my lengthy visits have served to “normalize” my presence. in case of emergency, it would seem “normal” for me to just go there. honestly, for that part, my grdaughter would not bat an eye.
i believe this is a great thing. we did not plan it, but, this is how things have unfolded. i sleep on the sofa or their floor, and i’m thankful to be able to do it.
in my imagination, i’m thinking something similar might work for your family? it’s a matter of “who?” could do that. and, hopefully, someone who could help with the animals, etc.
it would be disruptive to all to try to sell. if possible, i would avoid that thinking at this time.
when Amanda gets better, she might be burdened with awful guilt, that would be sad. hopefully, unnecessary.
i’m remote, in many ways.
i have faith others are “brainstorming” on this, too; very likely in much better ways than i! -
don’t let me be a distraction.
i’m glad the PDF talks about normalcy, and lack of stress, esp for the child, but, also for all involved. this is where faith is priceless. in faith, we can find the way.
during my husband’s terrible illness, i was thankful we were not new in faith, it was the comfort and guidance we knew, and could turn to. and, we most certainly did. because of this, we even experienced joy in the process. (this can seem impossible to explain.) but, it’s real, and, i know you have this in your life.
0 x
-
Josh
Re: Amanda's Journey
You could contact my church’s missionaries to Toronto who would probably try to help, although their home probably isn’t big enough for 9 people.Hats Off wrote:Amanda Horst, 14 year old daughter of Galen and Patricia has just received the official diagnosis of Restrictive Cardiomyopathy. Doctors are recommending a heart transplant as soon as possible which would have to be done at Toronto Sick Children's Hospital and would require Amanda to be less than 2 hours from the hospital at all times. Galen has a business to run with one employee in addition to his 16 year old son. Their home is about 4 hours from the hospital.
Some significant questions and concerns:
Can they find an affordable place to stay in the city for a family with 7 children?
They currently live on top of a hill out in the country; they have some pigs, chickens, goats, a cow and some ducks. How long could they stand living in the city?
They have 2 or three dogs - the other livestock can be sold but what about the children's pets?
What do they do for church? If Galen drives back and forth every week so he can spend some time in the city with the family they won't be interested in driving 4 hours back for church every week.
What about the sixteen year old son? Does he just work when Galen is at work? What about the employee? Can he continue to work without supervision several days a week?
Where does the money come from to pay for the second home?
Can they leave Amanda in Toronto for brief periods with other volunteers who would keep her company?
They are letting the weekend go by; Amanda is at home and can do thinks like being a big sister to 4 younger sisters; she can wash dishes and help with the younger children's homework. She can't do anything strenuous - she experiences chest pains from over exertion. We will see what happens in the next days and weeks.
0 x
-
Hats Off
Re: Amanda's Journey
They have an appointment at Toronto Sick Children's Hospital for April 15th. We have been checking for available rental accommodations suitable for a family of 9 for a year or more.
Over a year ago a rich Jewish couple was found murdered in their 12,000 square foot mansion in Toronto. The family have tried selling it for between 6 and 7 million but murder houses are not in high demand. They now have permission to demolish the house. Someone suggested - why not get the Sherman family to let Galen's family use the house as long as they need it. So I found the lawyer's contact information - he is one of the top Canadian criminal lawyers - and sent him an email asking him to give the Sherman family our contact information. The diseased Sherman husband and wife had donated millions to worthy causes so I suggested that this would be in keeping with the Sherman's philanthropically history. Further, I suggested that the joyful laughter and shouts of these happy youngsters would "clean the air" and make it possible for them to later sell the house without the murder stigma attached. They would be doing something good at no cost to them, and they might be able to recover millions out of the deal.
At the same time Galen managed to contact an old family friend of the Sherman's and gave him the same story. If nothing comes of it, it is good for a laugh.
Over a year ago a rich Jewish couple was found murdered in their 12,000 square foot mansion in Toronto. The family have tried selling it for between 6 and 7 million but murder houses are not in high demand. They now have permission to demolish the house. Someone suggested - why not get the Sherman family to let Galen's family use the house as long as they need it. So I found the lawyer's contact information - he is one of the top Canadian criminal lawyers - and sent him an email asking him to give the Sherman family our contact information. The diseased Sherman husband and wife had donated millions to worthy causes so I suggested that this would be in keeping with the Sherman's philanthropically history. Further, I suggested that the joyful laughter and shouts of these happy youngsters would "clean the air" and make it possible for them to later sell the house without the murder stigma attached. They would be doing something good at no cost to them, and they might be able to recover millions out of the deal.
At the same time Galen managed to contact an old family friend of the Sherman's and gave him the same story. If nothing comes of it, it is good for a laugh.
0 x