The Crowley's Journey with RARE CMMRD
Donation protected
The Crowley's are dear friends of mine. Kimmy and I have been friends for our entire lives, that's special. We have shared a lot in the last 30 odd years, lots of ups and downs. Our kids are best friends and we stay close no matter what. Since November I have watched them go through so much, far too much for one family to handle and it is heartbreaking. However, they have proven to be warriors doing anything and everything they can to pick themselves up show up for their kids and themselves. They're Inspiring!
CMMRD is a very rare genetic condition that increases a child’s risk of cancer. The Crowley family’s journey began in November 2020 when their oldest child, Sophia, was diagnosed with stage 4 glioblastoma. They have since learned that it was caused by 2 copies of a genetic mutation in the gene MSH2 and that their youngest daughter, Lyla, has also inherited this condition. Kim and Chris along with their son Noah have learned that they also have a syndrome named Lynch syndrome which increases their risk of cancer as well, specifically colon cancer.
The prevalence of CMMRD (sometimes referred to as BMMRD) is about 1 in 1 million. They are currently the only family in the province of Newfoundland to have children with this disorder.
They are currently on a rollercoaster and it has thrown their future into a bit of uncertainty, as you can imagine it has changed their ability to be able to work and Kim has been off completely since November with an unknown date of return having to support the care needed for Sophia and now Lyla as well. Chris travels for work making him have to leave his family at times and other times having to leave to come home at a moments notice. They may have to travel to another province in the future for further care, there are so many unknowns right now. Any funds that can be shared with them would be greatly appreciated as it would ease their burden just a little bit. I will post some updates on Sophia and the Crowley Family as a whole here as time goes on.
Thank you in advance for any support you are willing to give.
CMMRD is a very rare genetic condition that increases a child’s risk of cancer. The Crowley family’s journey began in November 2020 when their oldest child, Sophia, was diagnosed with stage 4 glioblastoma. They have since learned that it was caused by 2 copies of a genetic mutation in the gene MSH2 and that their youngest daughter, Lyla, has also inherited this condition. Kim and Chris along with their son Noah have learned that they also have a syndrome named Lynch syndrome which increases their risk of cancer as well, specifically colon cancer.
The prevalence of CMMRD (sometimes referred to as BMMRD) is about 1 in 1 million. They are currently the only family in the province of Newfoundland to have children with this disorder.
They are currently on a rollercoaster and it has thrown their future into a bit of uncertainty, as you can imagine it has changed their ability to be able to work and Kim has been off completely since November with an unknown date of return having to support the care needed for Sophia and now Lyla as well. Chris travels for work making him have to leave his family at times and other times having to leave to come home at a moments notice. They may have to travel to another province in the future for further care, there are so many unknowns right now. Any funds that can be shared with them would be greatly appreciated as it would ease their burden just a little bit. I will post some updates on Sophia and the Crowley Family as a whole here as time goes on.
Thank you in advance for any support you are willing to give.
Organizer and beneficiary
Gail Anne
Organizer
Paradise, NL
Kimberley Crowley
Beneficiary