Little miss Zoe and her journey with SLC35A2-CDG
Donation protected
First and foremost, thank you for visiting this link to help, share and support my cousins, The Gibbons', during this stressful time in their lives.
October 4, 2018 everything changed forever. Little miss Zoe was born. Hospital staff were quick to mention Zoe’s unproportioned head and limbs but she was pure perfection in our eyes.
Unfortunately, it wasn’t long before we were back in the hospital battling a series of medical issues. After many ups and downs, long sleepless nights, terrifying moments and dozens and dozens of tests... she was finally diagnosed with Congenital Disorder of Glucosilation (CDG) Type 2M (aka SLC35A2).
CDG presents differently in cases but is basically the cause for differences in Zoe's fingers and toes, her low tone, eating issues, her eyesight and overall global delays. The first 3 reported cases were documented in 2013 and Zoe is 1 of approximately 50 cases world-wide.
There is not much existing research on this rare genetic disorder and Zoe is receiving a trial medication which will hopefully help her develop. Unfortunately, this is the first of many medical expenses which are not covered by OHIP or private insurance companies. Your donations are currently being used to cover this $195/month cost which will increase as she gains weight.
Needless to say, this is just the beginning of Zoe’s journey with CDG. She will need more medications and medical equipment which will not fully be covered. She will continue to develop at her own pace and there are still many unanswered questions about her future development.
The one thing we know is that we are forever grateful for the family and friends and complete strangers that have helped us during this time in our lives. The generosity, love and support means the world to us during this life long journey ahead of Zoe.
I truly believe Zoe is one of our greatest gifts. She has shown all of us that everyone is special in their own way; that no matter how hard things may seem - it gets better and it could be so much worse.
Zoe is our hero and I will forever be grateful for her and the lessons she has taught us.
If you want to donate directly you can send it to their email: [email redacted]
Thank you everyone for your generosity, support, love and prayers.
October 4, 2018 everything changed forever. Little miss Zoe was born. Hospital staff were quick to mention Zoe’s unproportioned head and limbs but she was pure perfection in our eyes.
Unfortunately, it wasn’t long before we were back in the hospital battling a series of medical issues. After many ups and downs, long sleepless nights, terrifying moments and dozens and dozens of tests... she was finally diagnosed with Congenital Disorder of Glucosilation (CDG) Type 2M (aka SLC35A2).
CDG presents differently in cases but is basically the cause for differences in Zoe's fingers and toes, her low tone, eating issues, her eyesight and overall global delays. The first 3 reported cases were documented in 2013 and Zoe is 1 of approximately 50 cases world-wide.
There is not much existing research on this rare genetic disorder and Zoe is receiving a trial medication which will hopefully help her develop. Unfortunately, this is the first of many medical expenses which are not covered by OHIP or private insurance companies. Your donations are currently being used to cover this $195/month cost which will increase as she gains weight.
Needless to say, this is just the beginning of Zoe’s journey with CDG. She will need more medications and medical equipment which will not fully be covered. She will continue to develop at her own pace and there are still many unanswered questions about her future development.
The one thing we know is that we are forever grateful for the family and friends and complete strangers that have helped us during this time in our lives. The generosity, love and support means the world to us during this life long journey ahead of Zoe.
I truly believe Zoe is one of our greatest gifts. She has shown all of us that everyone is special in their own way; that no matter how hard things may seem - it gets better and it could be so much worse.
Zoe is our hero and I will forever be grateful for her and the lessons she has taught us.
If you want to donate directly you can send it to their email: [email redacted]
Thank you everyone for your generosity, support, love and prayers.
Organizer and beneficiary
Kayla Coles
Organizer
Bowmanville, ON
Sarah-Lynne Gibbons
Beneficiary