Julian Bay Brencher's Medical Fund
Donation protected
In exciting and hopeful news, Julian's Boston Children’s Hospital team, who work tirelessly to control his symptoms and manage his illness, have gotten Julian an invitation to be seen at the National Institutes of Health in Bethesda, Maryland for a second opinion.
Julian is scheduled to spend the week of July 23rd inpatient at NIH where he will be seen by a team in the Immunology department that is headed by Dr. “Gigi” Notorangelo, a superstar in his field for his groundbreaking work in genetic research. Dr. Gigi has successfully discovered many genetic mutations and deletions that are the culprit of different immune disorders and diseases. While the complete plan is not yet in place, Julian will likely undergoa bone marrow biopsy, CT Scan, blood work, and a triple scope (bronchoscopy, upper endoscopy and colonoscopy).
This is an amazing opportunity for Julian, and we are hopeful that it will lead to new information about his condition, and ultimately, a cure for our little guy. For while his remarkable BCH team has worked tirelessly to find the underlying cause of his medical condition, they have been unable to diagnose Julian, which is one of the most challenging aspects of his medical journey. There is no medical research to reference for his specific set of afflictions, or rule book to follow when treating Julian, and,it being an undiagnosed condition, we have no information or insight on the prognosis or trajectory of his disease.
As you may know, Julian Bay Brencher, our exuberant, bright, sweet and amazing little five-year old suffers from complex medical conditions that are life limiting and at times life threatening, which inevitably take a heavy toll on him and every aspect of our family’s lives. Because Julianhas been sick since infancy, his medically complex life, which includes frequent hospitalizations, is one that he takes in stride with incredible courage and bravery. And while Julian has his fair share of challenges, he meets each day with joy and a zeal for life.
We are creating this GoFundMe to ask for financial support to help fund our trip to NIH. Specifically, there will be travel expenses including airfare, hotel, and car rental as well as general living expenses for Julian and I while we are there.
And while it may be a universal truth that caring for a sick child comes with its fair share of challenges and the accompanying host of emotions like stress, fear, sadness and frustration, we, as a family, stand tall and are able to persevere because of the amazing love and support of our community, of which we are forever grateful. So again, from the bottom of our hearts, thank you for your support.
Should you want to follow us through our trip to NIH, I will be posting regular updates to Julian’s Caring Bridge page.
https://www.caringbridge.org/visit/julianbrencher
Thank you again.
With gratitude,
Kurt, Jenna, Julian and Grace Brencher
Julian is scheduled to spend the week of July 23rd inpatient at NIH where he will be seen by a team in the Immunology department that is headed by Dr. “Gigi” Notorangelo, a superstar in his field for his groundbreaking work in genetic research. Dr. Gigi has successfully discovered many genetic mutations and deletions that are the culprit of different immune disorders and diseases. While the complete plan is not yet in place, Julian will likely undergoa bone marrow biopsy, CT Scan, blood work, and a triple scope (bronchoscopy, upper endoscopy and colonoscopy).
This is an amazing opportunity for Julian, and we are hopeful that it will lead to new information about his condition, and ultimately, a cure for our little guy. For while his remarkable BCH team has worked tirelessly to find the underlying cause of his medical condition, they have been unable to diagnose Julian, which is one of the most challenging aspects of his medical journey. There is no medical research to reference for his specific set of afflictions, or rule book to follow when treating Julian, and,it being an undiagnosed condition, we have no information or insight on the prognosis or trajectory of his disease.
As you may know, Julian Bay Brencher, our exuberant, bright, sweet and amazing little five-year old suffers from complex medical conditions that are life limiting and at times life threatening, which inevitably take a heavy toll on him and every aspect of our family’s lives. Because Julianhas been sick since infancy, his medically complex life, which includes frequent hospitalizations, is one that he takes in stride with incredible courage and bravery. And while Julian has his fair share of challenges, he meets each day with joy and a zeal for life.
We are creating this GoFundMe to ask for financial support to help fund our trip to NIH. Specifically, there will be travel expenses including airfare, hotel, and car rental as well as general living expenses for Julian and I while we are there.
And while it may be a universal truth that caring for a sick child comes with its fair share of challenges and the accompanying host of emotions like stress, fear, sadness and frustration, we, as a family, stand tall and are able to persevere because of the amazing love and support of our community, of which we are forever grateful. So again, from the bottom of our hearts, thank you for your support.
Should you want to follow us through our trip to NIH, I will be posting regular updates to Julian’s Caring Bridge page.
https://www.caringbridge.org/visit/julianbrencher
Thank you again.
With gratitude,
Kurt, Jenna, Julian and Grace Brencher
Organizer
Jenna Moore
Organizer
Eastham, MA