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To the Dads of Kids Newly Diagnosed With a Rare Disease


As Rare Disease Day has arrived, I have started thinking about my daughter Abby’s path to a diagnosis. I realize that at this time exactly four years ago, we were an undiagnosed family. We knew something was not quite right but had no idea what was causing Abby to learn slower than her peers. When we received the diagnosis of Sanfilippo syndrome, we relied on our family and friends to help us cope. Thankfully, we began to meet the most inspiring families who had been walking this path before us. As time went on, more children were diagnosed and we became one of the older diagnosed families. It seems to be a continuous, never-ending cycle.

As we have traveled this path over the past four years, we have met some pretty special families with the most dedicated dads. Dads who may not know how appreciated they are. Dads who love their children fiercely and unselfishly. Dads who live a life that revolves around rare diseases and life-threatening illnesses. Dads who turned their despair into a fight for something bigger. Dads who have not given up and continue to live a life with purpose. Dads who are an invaluable resource to other families who walk the same path in life.

As I reflect on the dads living a life similar to ours, I begin to think about the dads of undiagnosed kids. The dads out there with children who have not yet been diagnosed with a rare disease or life-threatening illness. The dads lovingly rocking their newborns or playing games with their toddlers. The dads celebrating new milestones and birthdays. The dads who do not realize their lives will take a turn all too soon. The dads who will notice changes in their child and will begin seeking answers. The dads who have never heard the term “rare disease.” The dads who will receive a diagnosis that will change their lives forever. The dads who will be forced to think about their child’s mortality.

So to the newly diagnosed dads, I want you to know that there is hope.

There are many dads who have been where you are. These dads have been told there was no cure and that they would outlive their child. These dads were told there was no hope, that nothing could be done to help their child. These dads did not take “no” for an answer. They have become amazing advocates for their children and the entire rare disease community.

I asked some of the most inspiring dads that I know to share a message of encouragement and inspiration with you. My hope is that you will find their messages helpful on your path to finding peace…

man and son on boat
Tim and Will
Tim and Will

“It is important to try and focus on the time you have with your child right now. It can be overwhelming and crushing to think about the inevitable future, but focusing on making memories with your child now can help get you through.” — Tim, dad to Will

man holding young girl in his arms
Brian and Aislinn

Brian and Aislinn

“The child you have after you learn their diagnosis is the same child you had before. What’s different is that now you can use all the energy from uncertainty, fear and sadness to fight tirelessly for them.” — Brian, dad to Aislinn

dad kissing his daughter
Glenn and Eliza

Glenn and Eliza

“While your family needs you to be strong more than ever, it is normal to be human and break down. It is even healthy to have those moments, just get back up and keep going forward. You don’t need to be Superman. Love your child and enjoy every second with them. It may help to jump in the fight and try to find a cure. It can be empowering and cathartic to know you may be helping future children and families. You are doing everything you can… stay strong, Dad.” — Glenn, dad to Eliza

dad sliding down slide with daughter
Dave and Keira
Dave and Keira

“You have been given one of the greatest gifts possible… an understanding of what is truly important in life. Now have the courage to enjoy it and soak in all of the wonderful moments with your family.” — Dave, dad to Keira

dad sitting on stoop with two kids in halloween costumes
Carl (center), Brayden and Ryan
Carl, Brayden and Ryan

“This will be the toughest thing you will ever have to face, but we will beat it together. Lean on those who have dealt with the disease, for they will be your best resource. A lot of things will be out of your control, but there is one thing you can control, and that is your attitude. Stay positive, good things will happen.” — Carl, dad to Ryan and Brayden

dad holding hands with daughter at beach
Chad and Karsyn
Chad and Karsyn

“I learned right after Karsyn was diagnosed that I could not focus on planning for the future. I started telling myself that I must enjoy today. Enjoying today came with a lot of family time together that we will always remember.” — Chad, dad to Karsyn

dad with little girl and her arms around him
John and Abby
John and Abby

“One of the blessings in this diagnosis is that you learn to slow down, enjoy the moment and make special memories. You come to realize that each day with your child is a blessing.” — John, dad to Abby

All of these dads have children who have been diagnosed with Sanfilippo syndrome, a rare, terminal disorder. Thank you, dads, for all you do for your child and other children suffering the same fate. You are true heroes to your children, families and the rare disease community.

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