Support Anderson's Heart Surgeries
Donation protected
This summer we received the news that our son Anderson was going to be born with a congenital heart condition called CCTGA (Congenital Corrected Transposition of the Great Arteries). CCTGA is very rare (it affects 0.5% of all CHD's) and to be corrected it requires several complicated surgeries, best done in the first year or so of life. Lucky for us we have found an amazing team of surgeons and doctors at Boston's Children's Hospital who are knowledgeable about this disorder and are ready to start helping Anders when he arrives in early November.
We have spent the last months getting excited and ready to welcome our little man, while simultaneously researching medical procedures and planning (both logistically and financially) for all of the surgeries he will be having. Anyone who knows us knows how much we love to have every aspect of our life planned out to the fullest, so this has been a real challenge. It is all complicated by the fact that the surgical timeline is up in the air, depending upon what the doctors see in the echocardiograms taken right after he is born.
We are very thankful for our amazing insurance , but we have run into some difficulty when it comes to finding housing in Boston. Boston is very limited in the amount of subsidized patient/family housing they can provide. We have talked extensively with the hospital social workers and there is a months long waiting list at many of the charity houses, and we would not even be able to get onto the waiting list until after he is born and a surgery date has been scheduled. His first surgery will either be the first week or month of life, so that leaves us very little time to plan. The hospital does allow one parent to sleep in the fold out chair in the room with Anders and use the public bathrooms with access to a shower, but this would obviously not be an ideal situation over weeks or months of staying there, especially when we have our toddler daughter to think about.
As a family we have been looking at other options to try and stay together to support each other during this difficult time. Since we will be gone for so long, we cannot fathom leaving our 18 month old daughter behind, especially over the holidays. We have looked into getting a hotel until hopefully we could get into one of the charity houses, but even the cheap hotels cost just under $300 a night. This means if we have to stay for a month or more we are looking at a significant bill. We have also looked into renting a furnished apartment for a month or finding a long term Airbandb, but both would cost at least $5,000 and in either case we would be locked into paying for the whole month, even if the charity houses were to have a room open up part way through our stays. If space does open up we were told that it may not cover our whole stay or be able to accommodate a family. The social worker explained that many families decide to leave one parent at home, while the other travels to care for their ill child. They realize that there is high need for family housing, but are often unable to provide it.
On top of the cost of housing in Boston we will have travel expenses, parking costs, food, the bills at home, and Kirsten may have to take some unpaid time at the end of her maternity leave before she can apply for the sick bank to get some paid time off from work. As of right now, Kirsten will be taking months off of work (just for his first surgery) to care for the medical needs of our son. Between the two of us, we will be paying back the sick bank for years to come. We are very thankful though that we have that option available to us. After spending months looking at the costs and trying to find any savings we can, we have come to realize that we are going to need help.
I can honestly say that this is the most difficult thing that I have ever tried to write. Both Kirsten and I have a hard time putting aside our pride and asking for help. On top of this so many people have already provided help that we are very grateful for, that it seems shameful to ask for more. But, it is even more frustrating to catch myself worrying more about how I am going to pay for everything than about my child's health. I am discovering that these are the realities for parents of sick children and the one thing I cannot afford is to be too prideful.
Please consider helping our family out in our time of need. No contribution is too small be it money, a hug, or a prayer (please send hugs and prayers in person as they are difficult to send over the internet).
If you wish to keep up with our progress or want to know more about Anderson's condition follow our Facebook page by searching:
"@teamtwichell" or "Staying Upbeat for Anderson's Congenital Heart Defect"
If you are reading this we want to at the very least thank you for being in our lives! We have been blessed with the best friends/family members and in that regard Anders is already going to be born with a ton of love to help mend his fragile heart.
- Team Twichell (Jed, Kirsten, Harper, and Anderson)
We have spent the last months getting excited and ready to welcome our little man, while simultaneously researching medical procedures and planning (both logistically and financially) for all of the surgeries he will be having. Anyone who knows us knows how much we love to have every aspect of our life planned out to the fullest, so this has been a real challenge. It is all complicated by the fact that the surgical timeline is up in the air, depending upon what the doctors see in the echocardiograms taken right after he is born.
We are very thankful for our amazing insurance , but we have run into some difficulty when it comes to finding housing in Boston. Boston is very limited in the amount of subsidized patient/family housing they can provide. We have talked extensively with the hospital social workers and there is a months long waiting list at many of the charity houses, and we would not even be able to get onto the waiting list until after he is born and a surgery date has been scheduled. His first surgery will either be the first week or month of life, so that leaves us very little time to plan. The hospital does allow one parent to sleep in the fold out chair in the room with Anders and use the public bathrooms with access to a shower, but this would obviously not be an ideal situation over weeks or months of staying there, especially when we have our toddler daughter to think about.
As a family we have been looking at other options to try and stay together to support each other during this difficult time. Since we will be gone for so long, we cannot fathom leaving our 18 month old daughter behind, especially over the holidays. We have looked into getting a hotel until hopefully we could get into one of the charity houses, but even the cheap hotels cost just under $300 a night. This means if we have to stay for a month or more we are looking at a significant bill. We have also looked into renting a furnished apartment for a month or finding a long term Airbandb, but both would cost at least $5,000 and in either case we would be locked into paying for the whole month, even if the charity houses were to have a room open up part way through our stays. If space does open up we were told that it may not cover our whole stay or be able to accommodate a family. The social worker explained that many families decide to leave one parent at home, while the other travels to care for their ill child. They realize that there is high need for family housing, but are often unable to provide it.
On top of the cost of housing in Boston we will have travel expenses, parking costs, food, the bills at home, and Kirsten may have to take some unpaid time at the end of her maternity leave before she can apply for the sick bank to get some paid time off from work. As of right now, Kirsten will be taking months off of work (just for his first surgery) to care for the medical needs of our son. Between the two of us, we will be paying back the sick bank for years to come. We are very thankful though that we have that option available to us. After spending months looking at the costs and trying to find any savings we can, we have come to realize that we are going to need help.
I can honestly say that this is the most difficult thing that I have ever tried to write. Both Kirsten and I have a hard time putting aside our pride and asking for help. On top of this so many people have already provided help that we are very grateful for, that it seems shameful to ask for more. But, it is even more frustrating to catch myself worrying more about how I am going to pay for everything than about my child's health. I am discovering that these are the realities for parents of sick children and the one thing I cannot afford is to be too prideful.
Please consider helping our family out in our time of need. No contribution is too small be it money, a hug, or a prayer (please send hugs and prayers in person as they are difficult to send over the internet).
If you wish to keep up with our progress or want to know more about Anderson's condition follow our Facebook page by searching:
"@teamtwichell" or "Staying Upbeat for Anderson's Congenital Heart Defect"
If you are reading this we want to at the very least thank you for being in our lives! We have been blessed with the best friends/family members and in that regard Anders is already going to be born with a ton of love to help mend his fragile heart.
- Team Twichell (Jed, Kirsten, Harper, and Anderson)
Fundraising team: Team Twichell (2)
Jed Tahawus
Organizer
Horseheads, NY
Kirsten Southard-Twichell
Team member
