Al's Bucket List & Medical Trips
Donation protected
We're the Swanson's.....I'm Amy, these are my daughters Briana and Sophia and my husband Al. We live in a quiet town in the lakes region of New Hampshire. This picture was taken last summer when we thought we had our whole lives ahead of us.
When our daughter Sophia was born seven years ago with congenital glaucoma, we were told she would be visually impaired. I thought this was the worst news I would ever receive. About 18 months ago my husband started having odd symptoms. There would be one, then another four months or so later....we didn't think anything of them, attribute them to anything or thought they were related in any way. Then in January Al began choking on liquids/foods and having trouble talking and was fatally diagnosed with progressive bulbar palsy.
Progressive bulbar palsy is sub-type of ALS that starts with difficulties in speaking, chewing and swallowing due to nerve deterioration. In most cases it turns into bulbar ALS. The prognosis for these patients is extremely poor. The average life expectancy for those with progressive bulbar palsy is 2-5 years from onset of symptoms. Al's already had these symptoms for 1.5 years. He doesn't talk a lot anymore and when he does he's not always understandable. His eating and swallowing is the biggest issue as his muscles are deteriorating quickly and he will be needing a feeding tube in the very near future.
When you are living your day to day life you always dream of places you want to go, things you'd like to do one day, family you want to see again and you always think you'll have plenty of time to do it all someday. What happens when someday is now?
I'm raising this money for my husband. We spent so much of the last seven years being devoted to Sophia (as we should) ; taking her back and forth to Boston for multiple surgeries, exams under anesthesia and doctors appointments that we had to put so many things we've wanted to do as a family on hold. We always thought there would be time .....little did we know. I want Al to be able to check some things off his bucket list.....to actually be able to enjoy as much as he can.....before he can only eat through the PEG tube or before his breathing or limbs are effected.
What he's always wanted to do:
RV across country, see Europe, see his siblings (it's been over 20yrs!), enjoy the MET, go back to PEI one more time, see MT and camp in Yellowstone.....all to name a few.
A small portion of the funds would also be used for trips to and from his medical appointments. He has numerous appointments a month and they are 2.5 hours away- one way. It certainly makes for a long day.
Time is important with our goal because of the gravity of the situation and he is deteriorating daily, but we don't have specific goal dates.
Getting a fatal diagnosis has been devastating. Spending every moment we can together while he's still able to enjoy it, is so important. It's those moments we'll look back later on while we're at multiple appointments, or when he's at the more difficult stages when we can look at pictures and hopefully brighten his day a little.
We appreciate anyone who is taking he time to read this and/or is donating. You'll never know how much it means to us to give Al a little bit of happiness in the darkness of this disease.
~Amy
When our daughter Sophia was born seven years ago with congenital glaucoma, we were told she would be visually impaired. I thought this was the worst news I would ever receive. About 18 months ago my husband started having odd symptoms. There would be one, then another four months or so later....we didn't think anything of them, attribute them to anything or thought they were related in any way. Then in January Al began choking on liquids/foods and having trouble talking and was fatally diagnosed with progressive bulbar palsy.
Progressive bulbar palsy is sub-type of ALS that starts with difficulties in speaking, chewing and swallowing due to nerve deterioration. In most cases it turns into bulbar ALS. The prognosis for these patients is extremely poor. The average life expectancy for those with progressive bulbar palsy is 2-5 years from onset of symptoms. Al's already had these symptoms for 1.5 years. He doesn't talk a lot anymore and when he does he's not always understandable. His eating and swallowing is the biggest issue as his muscles are deteriorating quickly and he will be needing a feeding tube in the very near future.
When you are living your day to day life you always dream of places you want to go, things you'd like to do one day, family you want to see again and you always think you'll have plenty of time to do it all someday. What happens when someday is now?
I'm raising this money for my husband. We spent so much of the last seven years being devoted to Sophia (as we should) ; taking her back and forth to Boston for multiple surgeries, exams under anesthesia and doctors appointments that we had to put so many things we've wanted to do as a family on hold. We always thought there would be time .....little did we know. I want Al to be able to check some things off his bucket list.....to actually be able to enjoy as much as he can.....before he can only eat through the PEG tube or before his breathing or limbs are effected.
What he's always wanted to do:
RV across country, see Europe, see his siblings (it's been over 20yrs!), enjoy the MET, go back to PEI one more time, see MT and camp in Yellowstone.....all to name a few.
A small portion of the funds would also be used for trips to and from his medical appointments. He has numerous appointments a month and they are 2.5 hours away- one way. It certainly makes for a long day.
Time is important with our goal because of the gravity of the situation and he is deteriorating daily, but we don't have specific goal dates.
Getting a fatal diagnosis has been devastating. Spending every moment we can together while he's still able to enjoy it, is so important. It's those moments we'll look back later on while we're at multiple appointments, or when he's at the more difficult stages when we can look at pictures and hopefully brighten his day a little.
We appreciate anyone who is taking he time to read this and/or is donating. You'll never know how much it means to us to give Al a little bit of happiness in the darkness of this disease.
~Amy
Organizer
Amy Swanson
Organizer
Sanbornville, NH