Celebrating HPE Awareness Week, Sharing Our Families’ Stories

Phillip Brewer Shares a Dad’s Story of Son Maddox

A dad has special dreams of enjoying good times with their son – from pitching a baseball or football or walking the dog together to hitting the local skateboard park.  No dad envisions their son receiving a life-changing diagnosis or almost losing that beloved child twice.  Phillip Brewer’s life with son Maddox started out with every wonderful expectation and anticipation of all the things a father and son have to look forward to doing together.  Then, when Maddox was 4-months old, Phillip and his former wife learned that their son had holoprosencephaly.

With that diagnosis, a dark chapter empty of hope began. “Men can feel especially alone,” Phillip says, reflecting on the low points in his journey with HPE.  “Families for HoPE started me in the right direction.  We went from no hope at that point to reasons for hope.”  Through the connections and support given his family, Phillip learned that there are so many variances with HPE kids.   “Don’t let the dire prognosis steal your hope,” he says. “It is not hopeless.”

Phillip recalls the “darkest, scariest moment” of his life – Maddox’s emergency intubation.  The family held onto hope and saw their son survive.  “The second time Maddox was intubated was for safety,” says Phillip.  Again, Maddox survived.  Thankfully, doctors had learned that taking a pro-active approach produced hoped for, life-saving results.

Today, Maddox is a ‘tween-ager’ who will transition to a full-fledged teen in April when he turns 14 years-old.  He is successfully co-parented by Phillip and Maddox’s mom who lives nearby in their small town of Union City, IN adjacent to Richmond and Muncie, IN.  Phillip describes his son’s personality as “bright.” “He’s always smiling,” Phillip says, even though he has his less than positive moments just like any other adolescent.  Though non-verbal, Maddox is very much aware of his environment and everyone in it, his dad says.

On his family’s journey with HPE, Phillip has learned other key lessons.  “Mental health is so important, especially during the winter months,” he says, underscoring the importance of good self-care.  Through his spiritual life encompassing prayer and God, Phillip gains strength. Running, music, drumming all contributes to Phillip’s self-care routine. “I love hiking, camping and the outdoors,” he says.  “Music is something Maddox and I enjoy together, and I have learned to keep rested, I nap and sleep when he sleeps.”  Of course, Phillip gives credit to having family and friends nearby, in addition to the help of a home nurse.

While Phillip has been an active member of Families for HoPE’s dads’ group and attended the group’s outings in Tennessee and Arizona in the past, he relishes and welcomes the opportunity for dads to get together regularly on virtual platforms like Zoom or Teams.  He also welcomes in-person coffee chats and meet-ups for dads who live close to one another.  “It’s so good to just connect to laugh and joke on social media, Zoom or in-person from time to time,” he says. “Families connecting and holding the hope for one another makes us all stronger.”

Please consider a donation to Families for HoPE today to ensure that Phillip and other parents raising a child with HPE will find the support they seek.