Rally for Roarke!
Donation protected
Do you know Roarke?!
He's 4 years old, loves superheros, going to school, his dog, and of course - having fun and being a kid!
He has a little brother - Reid, an incredibly dedicated and hardworking Mommy and Daddy, and so many people along with them who love and cherish him --
He also has Severe Hemophilia A (Click for more information)
There are two types of Hemophilia (a bleeding disorder): A and B -- A is the more serious of the two.
And since Roarke's is Severe Hemophilia A, he has less than 1% of Factor VIII in his blood
Hemophilia is caused when your body doesn't produce Factor VIII (Type A) or Factor IV (Type B) proteins in your blood to assist with clotting. This makes Hemophilia very hard to treat and very dangerous (especially for an active little boy!) Roarke's inability to have his blood properly coagulate means that knicks, bumps, and bruises can cause serious issues and internal bleeds.
Unfortunately, Roarke is also 1 of 37 IN THE WORLD with his genetic mutation, and 1 of 4 IN THE WORLD who have that genetic mutation and develop an inhibitor*
*Roarke's body sees the treatment as a foreign body and will attack the protein being infused. This makes his factor treatments ineffective and that leaves him with little to no protection in his daily life
He was diagnosed officially on March 31st of this year, and his first treated bleed was April 1st.
July 31st he was admitted to Sick Kid's Hospital in Toronto for surgery to place a port - a cath in his chest/heart, and they stayed in the hematology/oncology unit for 6 days.
Aside from that, Roarke is admitted to Sick Kids' a couple of times a month (unless he has an injury) and stays for 3-5 days. All the while he stays his normal, loveable, smiling, happy self.
Home care for Roarke is no longer provided. His mom and dad are responsible for administering his Factor by accessing the Port every morning. It takes being diligent about precautions to keep everything sterile and tons of practice. All it takes is one missed air bubble in the tube or syringe and his life is on the line. His mom (my dear cousin who is like a sister to me) fights anxiety every morning with a brave face.
Let's get down to the nitty gritty:
My goal for this amazing little man and his family is to offer some relief and smiles, especially with the holidays approaching.
Right now, the majority of Roarke's daily treatments, medications and supplies are not covered by Insurance and are paid out of pocket. The costs are substantial (upwards of $1200/month), and heartbreaking for me to consider for these people who are constantly raising money and doing work for causes that aid families in crisis and for illness research.
Obviously, this leaves almost no room for everyday expenses, let alone unexpected ones. Visits back and forth to Sick Kids, visits to family during the holidays, special gear to keep Roarke active in sports and activities, and also - the holidays coming up.
Please help me realize my dream for this family who is so dear to myself and so many others.
Let's Rally together for Roarke!
If you're unable to make a contribution, well wishes and shout outs to our favourite little guy are always appreciated, as well as just educating yourself on Hemophilia so you are aware and alert if someone has the condition around you.
Thank you to everyone!
He's 4 years old, loves superheros, going to school, his dog, and of course - having fun and being a kid!
He has a little brother - Reid, an incredibly dedicated and hardworking Mommy and Daddy, and so many people along with them who love and cherish him --
He also has Severe Hemophilia A (Click for more information)
There are two types of Hemophilia (a bleeding disorder): A and B -- A is the more serious of the two.
And since Roarke's is Severe Hemophilia A, he has less than 1% of Factor VIII in his blood
Hemophilia is caused when your body doesn't produce Factor VIII (Type A) or Factor IV (Type B) proteins in your blood to assist with clotting. This makes Hemophilia very hard to treat and very dangerous (especially for an active little boy!) Roarke's inability to have his blood properly coagulate means that knicks, bumps, and bruises can cause serious issues and internal bleeds.
Unfortunately, Roarke is also 1 of 37 IN THE WORLD with his genetic mutation, and 1 of 4 IN THE WORLD who have that genetic mutation and develop an inhibitor*
*Roarke's body sees the treatment as a foreign body and will attack the protein being infused. This makes his factor treatments ineffective and that leaves him with little to no protection in his daily life
He was diagnosed officially on March 31st of this year, and his first treated bleed was April 1st.
July 31st he was admitted to Sick Kid's Hospital in Toronto for surgery to place a port - a cath in his chest/heart, and they stayed in the hematology/oncology unit for 6 days.
Aside from that, Roarke is admitted to Sick Kids' a couple of times a month (unless he has an injury) and stays for 3-5 days. All the while he stays his normal, loveable, smiling, happy self.
Home care for Roarke is no longer provided. His mom and dad are responsible for administering his Factor by accessing the Port every morning. It takes being diligent about precautions to keep everything sterile and tons of practice. All it takes is one missed air bubble in the tube or syringe and his life is on the line. His mom (my dear cousin who is like a sister to me) fights anxiety every morning with a brave face.
Let's get down to the nitty gritty:
My goal for this amazing little man and his family is to offer some relief and smiles, especially with the holidays approaching.
Right now, the majority of Roarke's daily treatments, medications and supplies are not covered by Insurance and are paid out of pocket. The costs are substantial (upwards of $1200/month), and heartbreaking for me to consider for these people who are constantly raising money and doing work for causes that aid families in crisis and for illness research.
Obviously, this leaves almost no room for everyday expenses, let alone unexpected ones. Visits back and forth to Sick Kids, visits to family during the holidays, special gear to keep Roarke active in sports and activities, and also - the holidays coming up.
Please help me realize my dream for this family who is so dear to myself and so many others.
Let's Rally together for Roarke!
If you're unable to make a contribution, well wishes and shout outs to our favourite little guy are always appreciated, as well as just educating yourself on Hemophilia so you are aware and alert if someone has the condition around you.
Thank you to everyone!
Organizer
Michelle McWalters
Organizer
Port Hope, ON
