Kylie's Hirschsprung's Battle
Donation protected
Our strong baby girl Kylie continues to thrive despite her daunting Hirschprung’s Disease diagnosis when she was born! It’s hard to remember that this little bundle of joy has already gone through so much pain in her short life, yet she still smiles and laughs her way through it all.
Eryn and TJ were immensely grateful for the support their community showed them in the initial stages of Kylie’s diagnosis. All of the funds and support went towards taking extended time off to take care of Kylie, pay for uncovered supply and medical bills (due to the rarity of her condition, insurance did not cover half of the supplies that Kylie has regularly needed), and helped create a minor safety net for the family so they could continue to pay their mortgage while also supporting their family of four.
Now we enter the next stage of Kylie’s recovery: a major colorectal pull through surgery. The chances of this being Kylie’s last surgery are encouraging, but not certain. Despite the uncertainty and anxiety her family feels, they have some comfort in knowing that one of the best surgeons in this field, who specializes in colorectal surgery in Washington, DC will be doing Kylie's surgery. The first surgery is critical given the limited amount of bowel these kids have to begin with. In fact, some children with this disease have had upwards of +20 surgeries, and this is something that we would like to avoid for miss Kylie if at all possible.
Colorectal patients from all over the world travel to consult and have surgery with Dr. Marc Levitt at Children's National Hospital. He is a significant thought leader in this field, and advocates for the highest level of patient care, especially for kids with complex colorectal malformations. Here is a link to one of his recent TedTalks; https://www.youtube.com/watch?v=cueIydjyjS8.
Fortunately, Kylie’s case was reviewed and accepted and she is scheduled for surgery in the middle of August 2020! Unfortunately due to the complexity of this surgery, the extended time off needed, and the long distance nature of the Hospital, Eryn and TJ need our help making this dream come true.
The world is a crazy place right now; sickness, turmoil, and heartbreak have been a daily theme in most of our lives since Feb 2020. Our lives have been forever changed as we know it in more ways than one, with us all feeling the impacts emotionally, physically, and financially. No one likes to ask for financial help, especially when there is a major economic recession occurring. But, if there is anyone more deserving of your financial contribution for a better quality of life and future, it’s Kylie. This girl has proven numerous doctors wrong and surpassed insurmountable boundaries all with a smile on her face. We need more people like Kylie who face darkness and uncertainty with light and love; for when we as a community come together to help her heal, we also help heal the wounds within our own humanity.
All of your funds contributed will be used to cover expensive medical copays and deductibles, travel expenses (rental car, food, etc.) and an extended hotel stay for her recovery. Let’s come together and get this girl on a safe road to recovery, #PrayforKylieMay.
Eryn and TJ were immensely grateful for the support their community showed them in the initial stages of Kylie’s diagnosis. All of the funds and support went towards taking extended time off to take care of Kylie, pay for uncovered supply and medical bills (due to the rarity of her condition, insurance did not cover half of the supplies that Kylie has regularly needed), and helped create a minor safety net for the family so they could continue to pay their mortgage while also supporting their family of four.
Now we enter the next stage of Kylie’s recovery: a major colorectal pull through surgery. The chances of this being Kylie’s last surgery are encouraging, but not certain. Despite the uncertainty and anxiety her family feels, they have some comfort in knowing that one of the best surgeons in this field, who specializes in colorectal surgery in Washington, DC will be doing Kylie's surgery. The first surgery is critical given the limited amount of bowel these kids have to begin with. In fact, some children with this disease have had upwards of +20 surgeries, and this is something that we would like to avoid for miss Kylie if at all possible.Colorectal patients from all over the world travel to consult and have surgery with Dr. Marc Levitt at Children's National Hospital. He is a significant thought leader in this field, and advocates for the highest level of patient care, especially for kids with complex colorectal malformations. Here is a link to one of his recent TedTalks; https://www.youtube.com/watch?v=cueIydjyjS8.
Fortunately, Kylie’s case was reviewed and accepted and she is scheduled for surgery in the middle of August 2020! Unfortunately due to the complexity of this surgery, the extended time off needed, and the long distance nature of the Hospital, Eryn and TJ need our help making this dream come true.
The world is a crazy place right now; sickness, turmoil, and heartbreak have been a daily theme in most of our lives since Feb 2020. Our lives have been forever changed as we know it in more ways than one, with us all feeling the impacts emotionally, physically, and financially. No one likes to ask for financial help, especially when there is a major economic recession occurring. But, if there is anyone more deserving of your financial contribution for a better quality of life and future, it’s Kylie. This girl has proven numerous doctors wrong and surpassed insurmountable boundaries all with a smile on her face. We need more people like Kylie who face darkness and uncertainty with light and love; for when we as a community come together to help her heal, we also help heal the wounds within our own humanity.
All of your funds contributed will be used to cover expensive medical copays and deductibles, travel expenses (rental car, food, etc.) and an extended hotel stay for her recovery. Let’s come together and get this girl on a safe road to recovery, #PrayforKylieMay.
Organiser and beneficiary
Taylor Stretch
Organiser
Camas, WA
Eryn Bacewich
Beneficiary