mutation

Zella's diagnosis has brought a sense of peace and calm amidst the madness of life.  Knowing that there is a name for her complex array of (many times completely unrelated) symptoms is such a relief.  And we directly benefit from her syndrome being named because it has put us in touch with a truly amazing network of other parents, all raising children with an ADNP mutation.  They are quick to share everything with us --- their struggles and challenges and also their daily victories with these incredible children.  We are *so* thankful to have them as such an integral part of our lives. With the diagnosis have come other unexpected blessings.  Jake and I are now much more aware of the plight of special needs children and their families who struggle to raise them with few resources.  I have ... [Read More]