Many diagnoses can seem very intimidating on paper, and Apert syndrome is no exception.  Though, instead of seeing ‘no exception,’ we see exceptional, and we want to share with you about these exceptional children.  We asked an MAA family to share about their experience adopting a child with Apert syndrome.  Please read about their experience below, and please consider Viv, Nieve, and Victor, who are all waiting, and who are all exceptional.  In honor of these amazing kids, we are excited to announce our $2,000 Apert Awareness Grant.

In December of 2014, we brought our sweet son John home.  John had spent the month of July with our family during Madison Adoption Associate’s summer hosting program.  We knew he was ours within a very short period of time.  John is funny, joyful, thoughtful, and one of the kindest-hearted children you will ever meet.

John was born with Apert syndrome, a congenital disorder resulting in malformations of the skull, face, feet, and hands.  While John has more challenges than most children, we have been amazed at how seldom these challenges affect his day-to-day life. John plays baseball (well!) in our village’s league, he takes golf lessons, writes capably, and other than having difficulty with zippers, buttons, and shoelaces, John is independent for his age.  John is also doing grade level appropriate school work.

We assumed that because of John’s condition, we would be visiting doctors and specialists frequently.  However, while we are making sure he is getting the medical help he needs, John has only a few more doctors’ appointments per year than his sisters, who have the relatively “easy” special need of repaired cleft lip and palate.  John will have a craniofacial surgery in the near future, but his recovery process is expected to go relatively smoothly.

We are beyond grateful that we didn’t allow ourselves to be intimidated by what Apert syndrome looks like on paper.  John is an absolute delight and has brought so much joy and love to our home and to our circle of friends and family.


Viv, 3

Victor, 4

Nieve, 2


Viv, Nieve, and Victor are available for adoption through Madison Adoption Associates.  In addition to the standard MAA grants that these children’s families would qualify for, we are pleased to also announce the $2,000 Apert awareness grant.  Email Sarah@madisonadoption.org for more information, or complete the Prospective Adoptive Parent form for consideration.