Cheryl Haggard
03-29-2008, 01:15 AM
Luca John Foundation (http://www.lucajohnfoundation.org/index.htm)
On November 10th 2006 our son Luca was born with a lethal form of skeletal dysplasia called short rib polydactyl syndrome. As a result he died an hour and a half after his birth in our arms. Shortly after this we setup The Luca John foundation, a New Jersey based 501c(3) charity. When Luca was diagnosed we looked to find a cure, a way, an option for his survival and we found none.
We did extensive research online, with genetic counselors and doctors, and we found that the gene code that controls muscle growth, and causes all types of Skeletal Dysplasia has had limited research. To date there is a small handfull out of over 200 types of Skeletal Dysplasia's have had its gene code mapped. As a parent you try and protect your child from every harm there is. When you can not protect yours, you try to protect others.
There are two missions of this foundation:
First is to supply the research community with the funds it needs to do the necessary research to find the gene code that is responsible for these syndromes.
Second to provide the financial assistance of the funeral expenses for families that have experienced a loss of an infant child at 12 months or younger, or a stillbirth.
http://www.lucajohnfoundation.org/index.htm
On November 10th 2006 our son Luca was born with a lethal form of skeletal dysplasia called short rib polydactyl syndrome. As a result he died an hour and a half after his birth in our arms. Shortly after this we setup The Luca John foundation, a New Jersey based 501c(3) charity. When Luca was diagnosed we looked to find a cure, a way, an option for his survival and we found none.
We did extensive research online, with genetic counselors and doctors, and we found that the gene code that controls muscle growth, and causes all types of Skeletal Dysplasia has had limited research. To date there is a small handfull out of over 200 types of Skeletal Dysplasia's have had its gene code mapped. As a parent you try and protect your child from every harm there is. When you can not protect yours, you try to protect others.
There are two missions of this foundation:
First is to supply the research community with the funds it needs to do the necessary research to find the gene code that is responsible for these syndromes.
Second to provide the financial assistance of the funeral expenses for families that have experienced a loss of an infant child at 12 months or younger, or a stillbirth.
http://www.lucajohnfoundation.org/index.htm