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• 1P36 DELETION SUPPORT & AWARENESS

Being a parent to a 1p36 child brings a multitude of challenges that the parent of a typical child never has to consider. It can mean lengthy hospital stays, surgeries for heart, digestive or orthopedic complications, specialist appointments and more specialist appointments, a variety of medicines mulitple times a day, pediatric therapists to visit or that that visit you, education plans and meetings, specialized equipment for seating, mobility and sleeping, 24/7 seizure watch, oxygen monitors, feeding tubes, and diapers for a child well beyond potty training age. A parent of a 1p36 child experiences all or some of these things. The hardship is compounded when parents can't find support or the resources they need or simply connect with another person who relates with what they are going through. My daughter Kate, now 7, was diagnosed with 1p36 Deletion Syndrome at 18 months of age. Even before getting the diagnosis, we knew that she had some sort of genetic disorder due to her significant health and development issues but the doctors could not put their finger on it. Once we finally did have the diagnosis, we found that there was no-where to turn for support and guidence regarding 1p36 Deletion Syndrome Six months after getting the diagnosis, I finally happened upon a Yahoo! message board for 1p36 parents and I was so relieved to finally find someone who shared the same experiences as my family. It was because of the parents who started that message board (and others who organized our first conference or designed special 1p36 web sites) that 1p36 Deletion Syndrome Support & Awareness exists. It is essential that parents and caregivers of 1p36 children are able to connect with others and that the most recent and relevent information regarding the syndrome is available to them and to medical providers. Early diagnosis means that doctors and parents have new insight into a child's health issues. That insight can mean better outcomes to the most dangerous of 1p36 Deletion Syndrome's health complications. I believe strongly in the mission of this organization and know that with your help, we can make sure that all children with 1p36 Deletion Syndrome are diagnosed early and that their families get the help they need.

Kate, my sweet daughter with 1p36 Deletion Syndrome

The 1p36 organization is a fantastic network of families. This network not only provides support and education..but more importantly provides HOPE. This is especially important for newly diagnosed families. The annual conference, quarterly newsletters and yahoo support group are wonderful tools to help families with their journey of having a child with special needs.

1p36 deletion syndrome is a relatively new diagnosis. This organization is providing knowledge to the medical community and others about this disability. It is crucial for our children to get more help. The more information out there the better chance our children have to reach their fullest potential. They also have provided the opportunities for other 1p families to meet.

My wife and I have a 4 yr old son with 1p36 Deletion Syndrome. 1p36 Deletion Support & Awareness has been wonderful in providing both informational and emotional support. It is great to know that you have a family that you can talk to that can truly understand the things you are going through.

My granddaughter has 1p36 Deletion Syndrome. When we first found out, we were devastated, she was one of very few children at the time diagnosed with this chromosomal disorder, and information was limited. They told use she may or may not progress. Today through 1p36 Deletion Support and Awareness Group, we communicate experiences about daily life with our little and some not so little Angels. Learning that we are not alone and that each child/individual with this disorder is different helped us to better understand our little one. We learn through the exchange of information and support we provide to each other. We have an annual conference and invite speakers that are knowledgeable on the latest developments on the research front, teaching tools, for example, this year we will have a speaker that will present information about signing and a workshops for the siblings of children with 1p36. Although 1p36 Deletion Awareness and Support recently received its non-profit status, we have families from around the world that have been communicating with each other for some time. Posting our joys, sorrows, frustrations, and even anger at times, has been a tremendous help to all of our families. We learn from each other, not sure of why your child is behaving in a certain manner, post it and you will get information from a parent with a child that has experienced a similar situation. Concerned about, for example your child going through puberty, someone with knowledge will answer your questions and give you suggestions. As a volunteer, education is essential to understanding our children, each child is different, each child learns in a different manner and the ability to share personal experiences has enriched our family beyond words. Going forward, I would like to see this organization continue to provide education and support for families as well as communities and to learn more about research advances for this genetic disorder.