Support with 10 Dollars of love for Jakob
Donation protected
Hi! My name is Jakob.
I was born on August 8, 2019. All looked not bad on that day, but 10 days later Mom and Daddy were informed that I have Severe Combined Immunodeficiency (SCID), otherwise known as Bubble Boy Disease – think of John Travolta, 1976 (at least that’s what I’m told). The doctors later upped their diagnosis to ADA SCID (the rarest form). In simpler terms, I have no immunity to ANYTHING! A common cold can kill me. I quit listening at that point, but I decided I was going to fight this with everything I’ve got and outlive their medical expectations!
Without treatment, kids with ADA SCID usually live about 2 years. I want more!!! I want to be able to have friends. I want to have pets. I want to go to a toy store… a play park… a zoo… an amusement park… even a grocery store. I want to go to school!!! Even things as simple as… I want to go outside with more people around than just my parents! (love you, Mom and Daddy!)
Right now, the only place I get to go is the Stollery Children’s Hospital! I LOVE the people there… but they keep sticking needles in me! Lots and lots of needles! Sometimes they pull the needle out pretty quick… but other times they leave it in for hours. They call it by some letters… something like… IVIg?
Some days, when I’m at the Stollery, Mom is almost right next door at the Cross being treated for cancer. That makes me very sad, but the good part is that I get to spend way more time with Daddy now… but I still miss my Mom.
So, here’s my problem. Life-prolonging treatment (which is what I currently get) costs a lot of money… but life-saving treatment is BIG TIME expensive! My best shot at having a life… is having a bone marrow transplant. But here’s the hardest part… to have the best chance of a successful transplant… I need to find a donor… under the age of 35… who has one Caucasian parent and one Hispanic parent.
My next best shot at having a life is a gene therapy program in Italy. I’m told it might cost as much as $1,500,000!!! I can’t count past 5 yet!
This is where I need your help. If you are able, please donate to my GoFundMe.
I know that Mom and Daddy have had to face a lot of tough questions. About the worst thing they’ve had to think about is… “What if Jakob dies before he’s raised enough money for gene therapy? What do we do with the money he raised?”
They have promised to provide a full accounting for it… but here’s the general breakdown:
· Some may be used to cover any of my outstanding medical bills and costs.
· 10%, to a maximum of $40,000 will be used for my send-off party (I think you call it something boring like ‘funeral’ or ‘memorial service’).
· The balance will be used to assist other kids with SCID. This may be by supporting one or more of them directly with treatment options or by supporting organizations like:
o Swab the World
o The Canadian Immunodeficiencies Patient Organization CIPO
o SCID Angels For Life Foundation
o Or who knows, maybe they might start a Jakob’s Little Fighters fund!
I keep hearing Mom and Daddy saying things like, “Time is running out”. So, I’m begging you, please share this with your friends and family.
Speaking of running… I need to run and see if anyone is waiting for me in my boxing ring! Thanks for listening and thanks for your support!
Go to my Jakob Little Fighter Blog to know more about me!
I was born on August 8, 2019. All looked not bad on that day, but 10 days later Mom and Daddy were informed that I have Severe Combined Immunodeficiency (SCID), otherwise known as Bubble Boy Disease – think of John Travolta, 1976 (at least that’s what I’m told). The doctors later upped their diagnosis to ADA SCID (the rarest form). In simpler terms, I have no immunity to ANYTHING! A common cold can kill me. I quit listening at that point, but I decided I was going to fight this with everything I’ve got and outlive their medical expectations!
Without treatment, kids with ADA SCID usually live about 2 years. I want more!!! I want to be able to have friends. I want to have pets. I want to go to a toy store… a play park… a zoo… an amusement park… even a grocery store. I want to go to school!!! Even things as simple as… I want to go outside with more people around than just my parents! (love you, Mom and Daddy!)
Right now, the only place I get to go is the Stollery Children’s Hospital! I LOVE the people there… but they keep sticking needles in me! Lots and lots of needles! Sometimes they pull the needle out pretty quick… but other times they leave it in for hours. They call it by some letters… something like… IVIg?
Some days, when I’m at the Stollery, Mom is almost right next door at the Cross being treated for cancer. That makes me very sad, but the good part is that I get to spend way more time with Daddy now… but I still miss my Mom.
So, here’s my problem. Life-prolonging treatment (which is what I currently get) costs a lot of money… but life-saving treatment is BIG TIME expensive! My best shot at having a life… is having a bone marrow transplant. But here’s the hardest part… to have the best chance of a successful transplant… I need to find a donor… under the age of 35… who has one Caucasian parent and one Hispanic parent.
My next best shot at having a life is a gene therapy program in Italy. I’m told it might cost as much as $1,500,000!!! I can’t count past 5 yet!
This is where I need your help. If you are able, please donate to my GoFundMe.
I know that Mom and Daddy have had to face a lot of tough questions. About the worst thing they’ve had to think about is… “What if Jakob dies before he’s raised enough money for gene therapy? What do we do with the money he raised?”
They have promised to provide a full accounting for it… but here’s the general breakdown:
· Some may be used to cover any of my outstanding medical bills and costs.
· 10%, to a maximum of $40,000 will be used for my send-off party (I think you call it something boring like ‘funeral’ or ‘memorial service’).
· The balance will be used to assist other kids with SCID. This may be by supporting one or more of them directly with treatment options or by supporting organizations like:
o Swab the World
o The Canadian Immunodeficiencies Patient Organization CIPO
o SCID Angels For Life Foundation
o Or who knows, maybe they might start a Jakob’s Little Fighters fund!
I keep hearing Mom and Daddy saying things like, “Time is running out”. So, I’m begging you, please share this with your friends and family.
Speaking of running… I need to run and see if anyone is waiting for me in my boxing ring! Thanks for listening and thanks for your support!
Go to my Jakob Little Fighter Blog to know more about me!
Fundraising team (6)
Paola Andrea Fernandez De Soto AbdulRahin
Organizer
Raised $13,930 from 93 donations
Edmonton, AB
Michelle Gagate
Team member
Raised $885 from 8 donations
Ashley Batiuk
Team member
Raised $840 from 8 donations
Alexandra Kasprzyk
Team member
Raised $200 from 2 donations
Brittney Oshanyk
Team member
Raised $15 from 1 donation
