If you have a child who has recently been diagnosed with SMA you will be asked to make decisions that no parent should ever have to consider. It is important that you understand the care options available. These decisions should be based on what is right for YOUR child, YOU, and YOUR family. These decisions may test the boundaries of life as you know it. There is no “one correct answer.” You must do what you feel in your heart is right.
Below is a link to a document called “Caring Choices.” This document was produced by the national organization Families of SMA. This resource very thoroughly discusses the choices for caring for an SMA type 1 child.
It is very important that you know you are not alone. We would love to talk to you. We were very fortunate to be put in contact with extremely helpful families after Jadon's diagnosis and we would love to help you.
No family would have ever chosen to join the SMA Family but as we have learned it is an amazing group of people who fight the disease on a daily basis, support each other, and provide a network for finding what works best for the kiddos. When Jadon was diagnosed we were given a copy of an essay written by Emily Perl Kingsley, titled Welcome to Holland. It does a very good job of describing the change in our life directions due to a childhood diagnosis like SMA.
Life with SMA can be challenging but it is also very rewarding. Jadon, and him having SMA, has taught us a lot about Life, Love, and What is Really Important.
Please put “Newly Diagnosed” in the subject line and email us at Jadonshope@sbcglobal.net. We really would love to speak with you whether that is through email, on the phone, or in person.
Other Great Resources For an SMA Diagnosis
Facebook is a great resource for connecting with other families. There are many private groups dedicated to helping SMA families. Please contact us and we will get you added.