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As many of you who know us are aware, our Beautiful and Strong daughter Kendall has had quite a busy life in and out of hospitals, with doctors, and with therapist. Kendall was born with an ultra rare genetic condition called Deletion 8p Syndrome. It’s a unique genetic arrangement which causes mild to extreme developmental disorders, physical disabilities, and many mild to severe medical conditions.
This syndrome was not found in either of our genetic backgrounds meaning we don’t have any familiar history to investigate. Currently, there are only 65 known cases worldwide documented. This means there’s very little information out there in regards to the various 8p syndromes.
Apart from our close family and friends I have been lucky to get unending support from our 8p family, the families of the other 65 documented and people worldwide with the same diagnosis through social media. One of those parents in our 8p family is the the formidable Bina Shah. She created the Project 8p foundation https://www.project8p.org/ and has arranged a conference in New York, USA in June 2019.
The Foundation has recruited geneticists to launch a study into Kendall’s genetic condition to help those diagnosed get some true information about how it affects others and how the subsequent disabilities and health complications associated with this genetic condition can be best managed. We will be sharing all of Kendall’s medical documentation for the research study! We’re beyond excited to have this opportunity!
https://www.project8p.org/research-study
In short, this is a trip that we cannot financially afford on our own, but for Kendall to meet others just like her and to hear from medical professionals who can help her live her best life, it’s not something we feel we can afford to miss either. Other families plan also on travelling from Australia, New Zealand, the Phillipines, Europe, South America and also from across the USA and (only) US from CANADA! It will be truly spectacular to have so many ultra rare kids in the same place.
We are hoping that those who love us and Kendall can even spare a few dollars. For us to actually meet some of the people that I have built friendships and support networks online with, would be beyond a blessing. This conference will allow us to help shape the future of how families with 8p Syndrome will feel when they get such a scary and unknown diagnosis.
Our 8p children will contribute to the future genetic understanding of the many 8th chromosome disorders.
The conference will be held at Columbia University and we plan on staying quite close by. I Ashley (mum) and Brent (dad) will be going with Kendall and we hoped to raise enough money to even bring our children Naomi, Silas and Vayda along as well. After all we are her foundation of strength as she is ours. Our family will be forever in this journey together, at her side.
The Conference is on Fri 28th of June until Sun 30th of June. We plan on keeping costs as low as possible. Our fundraising covers; gas , passports we need to aquire for our children, accommodations (bed and breakfast) travel insurance , local travel expenses , as well as the conference entry fees...and anything else I’m forgetting right now.
Words can’t ever express how beyond thankful we all are. We are truly blessed to have so many friends and family supporting us.
Thank you for reading ,
Sincerely,
Ashley ~ Mother of the wild, witty and strong Kendall our 8P Wonder Woman
This syndrome was not found in either of our genetic backgrounds meaning we don’t have any familiar history to investigate. Currently, there are only 65 known cases worldwide documented. This means there’s very little information out there in regards to the various 8p syndromes.
Apart from our close family and friends I have been lucky to get unending support from our 8p family, the families of the other 65 documented and people worldwide with the same diagnosis through social media. One of those parents in our 8p family is the the formidable Bina Shah. She created the Project 8p foundation https://www.project8p.org/ and has arranged a conference in New York, USA in June 2019.
The Foundation has recruited geneticists to launch a study into Kendall’s genetic condition to help those diagnosed get some true information about how it affects others and how the subsequent disabilities and health complications associated with this genetic condition can be best managed. We will be sharing all of Kendall’s medical documentation for the research study! We’re beyond excited to have this opportunity!
https://www.project8p.org/research-study
In short, this is a trip that we cannot financially afford on our own, but for Kendall to meet others just like her and to hear from medical professionals who can help her live her best life, it’s not something we feel we can afford to miss either. Other families plan also on travelling from Australia, New Zealand, the Phillipines, Europe, South America and also from across the USA and (only) US from CANADA! It will be truly spectacular to have so many ultra rare kids in the same place.
We are hoping that those who love us and Kendall can even spare a few dollars. For us to actually meet some of the people that I have built friendships and support networks online with, would be beyond a blessing. This conference will allow us to help shape the future of how families with 8p Syndrome will feel when they get such a scary and unknown diagnosis.
Our 8p children will contribute to the future genetic understanding of the many 8th chromosome disorders.
The conference will be held at Columbia University and we plan on staying quite close by. I Ashley (mum) and Brent (dad) will be going with Kendall and we hoped to raise enough money to even bring our children Naomi, Silas and Vayda along as well. After all we are her foundation of strength as she is ours. Our family will be forever in this journey together, at her side.
The Conference is on Fri 28th of June until Sun 30th of June. We plan on keeping costs as low as possible. Our fundraising covers; gas , passports we need to aquire for our children, accommodations (bed and breakfast) travel insurance , local travel expenses , as well as the conference entry fees...and anything else I’m forgetting right now.
Words can’t ever express how beyond thankful we all are. We are truly blessed to have so many friends and family supporting us.
Thank you for reading ,
Sincerely,
Ashley ~ Mother of the wild, witty and strong Kendall our 8P Wonder Woman