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Welcome expectant and new parents, grandparents and family members!
You have probably found us because you have recently had a baby with Down syndrome or have been told that the baby you are expecting is likely to have Down syndrome. Whatever your circumstance, may we begin our conversation with, “Congratulations! We look forward to meeting you and your little one."
We know not everyone who has a recent diagnosis is ready to jump into a new community – and that is ok. Right now, we encourage you to take your time to gather information, formulate your questions and process your emotions. If you want help with any of that, we are here for you! If you want to wait a little longer, that’s ok – we will be here when you are ready! In the meantime, we have a list of resources we think will help you through this process.
In the early stages of a diagnosis, families experience a range of emotions. This is completely normal! You are in a safe space. We want to help you learn about Down syndrome so you can better understand what has been told to you. Oftentimes, the way families are told about their child’s diagnosis is not ideal. Many medical professionals only tell families about the limitations their child may face with Trisomy 21. If the words, “I’m sorry...” were spoken at this time, we are truly sorry. That is not how you should have been told.
The truth is, that is only a small part of the story and does not give you the complete picture of what lies ahead. It is our experience – with nearly 2,000 families – that the information shared with families at the time they receive a diagnosis and what they actually experience are vastly different scenarios.
The FOUNDATION believes that when POTENTIAL is given OPPORTUNITY the outcome is SUCCESS. We are here to support you throughout your journey. Just like all new things, there are many stages of understanding. Wherever you are in your process, we are thankful you have found The FOUNDATION and hope we can make a difference in your life.
It is our experience that when families connect with an organization like ours where they can meet others who have traveled a similar path, the journey becomes easier – and believe it or not, it can even be fun. You may not believe that at this particular time, which is ok. Our job is to help you obtain the information, support and help you need, but most importantly, we want to give you HOPE!
New parents often find this "Welcome to Holland" story very helpful in articulating how they feel about a diagnosis.
We can drop off a Welcome Baby! Basket
We can pair you up with a NEW FAMILY MENTOR. This is a family with a child with Down syndrome who is willing to be your personal guide as you start this journey
You can join our mailing list to receive our monthly newsletter that has our monthly events and information helpful to our community.
If you are not the parent, but are looking up information for someone you love, you can give them our contact information or contact us directly.
This book offers support and accurate, reliable information to the new parents of a baby with Down syndrome. The book covers topics like breastfeeding, adjusting to a diagnosis, preparing siblings, understanding medical issues, preparing for the future, and, most importantly, it shares diverse stories about the daily lives of families whose children have Down syndrome at different ages.
“Raising a child with Down syndrome is a journey, one filled with many joys and thrills, despite some occasional challenges. This must-have book helps new parents take confident first steps based on accurate and up-to-date information.” — Dr. Brian Skotko, Co-Director, Down Syndrome Program, Massachusetts General Hospital.
If you found us because you have had a prenatal diagnosis, you may find these resources helpful:
Other publications by Down syndrome groups around the world include:
Down Syndrome Foundation of Florida
PO Box 533462 Orlando, FL 32853-3462
The FOUNDATION is a 501(c)3 your donation is tax deductible
EIN number: 27-2436041