Help Bella!Kabuki syndrome research
Donation protected
PLEASE HELP MY LITTLE FIGHTER BELLA!!!
Dearest friends and family,
As you know, Bella struggles with many health issues including a life threatening auto-immune disease that requires chemo to treat it and yet another upcoming heart surgery on the 22nd.... Just to name a few challenges. Even though everyday is a challenge and I live my life worrying for my daughter and her future, we have been renewed with hope and excitement that her quality of life could change drastically.
Long story short, we attended an amazing conference where dr Hans bjorensen updated us on the research he has been conducting for kids with kabuki syndrome at Johns Hopkins. They have identified a drug that could help with bellas auto-immune disease, increase her cognitive abilities and much more. Truly ground breaking!!! They will be moving to human trials soon.
For a mom who prays everyday that her daughter can live a "normal" life some day- go to college, get married, etc, this is beyond exciting news! My dad who NEVER cries was even brought to tears!
Because kabuki syndrome is so rare, they need us to rally together to ensure they have funds to continue this important research. As I write this with tears in my eyes, I ask that you find it in your heart to donate any amount of money and please feel free to share my plea on fb or through email to your family and friends! Even if you could donate $5, I would be beyond grateful!
I absolutely hate to ask my friends and family for help, but for all of you that have healthy children, imagine if your had a special needs child and you could do something to improve the quality of life for your precious baby..... That is why I'm asking for help!
If all of my fb friends even donated $5 each, it would make a huge difference! I will close this out and send the check to dr bjorensen after Bella is discharged from the hospital at the end of the month. She said she will be excited to check everyday to see how much we can raise. It will be a great distraction while we are anticipating surgery and while in the hospital. Thanks in advance for your generosity, love and support!
Love,
Katie, Bella and payton and all the kabuki kids around the world!!!
Dearest friends and family,
As you know, Bella struggles with many health issues including a life threatening auto-immune disease that requires chemo to treat it and yet another upcoming heart surgery on the 22nd.... Just to name a few challenges. Even though everyday is a challenge and I live my life worrying for my daughter and her future, we have been renewed with hope and excitement that her quality of life could change drastically.
Long story short, we attended an amazing conference where dr Hans bjorensen updated us on the research he has been conducting for kids with kabuki syndrome at Johns Hopkins. They have identified a drug that could help with bellas auto-immune disease, increase her cognitive abilities and much more. Truly ground breaking!!! They will be moving to human trials soon.
For a mom who prays everyday that her daughter can live a "normal" life some day- go to college, get married, etc, this is beyond exciting news! My dad who NEVER cries was even brought to tears!
Because kabuki syndrome is so rare, they need us to rally together to ensure they have funds to continue this important research. As I write this with tears in my eyes, I ask that you find it in your heart to donate any amount of money and please feel free to share my plea on fb or through email to your family and friends! Even if you could donate $5, I would be beyond grateful!
I absolutely hate to ask my friends and family for help, but for all of you that have healthy children, imagine if your had a special needs child and you could do something to improve the quality of life for your precious baby..... That is why I'm asking for help!
If all of my fb friends even donated $5 each, it would make a huge difference! I will close this out and send the check to dr bjorensen after Bella is discharged from the hospital at the end of the month. She said she will be excited to check everyday to see how much we can raise. It will be a great distraction while we are anticipating surgery and while in the hospital. Thanks in advance for your generosity, love and support!
Love,
Katie, Bella and payton and all the kabuki kids around the world!!!
Organizer
Katie Pape
Organizer
Racine, WI