To the Newly Diagnosed Rare Disease Dads…There is Hope

The Rare Disease Day anniversary always makes me think about my daughter Abby’s path to a diagnosis. I realize that at this time exactly 4 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 were devastated and heart-broken. 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. Sadly, the diagnosis of new families is a continuous, never-ending occurrence.

As we have traveled this path over the past 4 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 whose dreams for their children have been shattered by a devastating diagnosis. Dads who turned their despair and hopelessness 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 walking the same path in life.

As I reflect on the dads living a life similar to ours, I begin to think about the undiagnosed dads. 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 for the worse all too soon. The dads who will notice changes in their child and will begin seeking answers.  The dads who have never heard the phrase “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 that 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 on this Rare Disease Day. My hope is that you will find their messages helpful on your path to finding peace…

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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

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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

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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

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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

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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

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Chad and Karsyn

I learned right after Karsyn was diagnosed that I could not focus or 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

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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 special dads have children who have been diagnosed with the rare disease Sanfilippo Syndrome. There is no cure or treatment and their life expectancy is typically between 10-20 years old. Thank you dads for all that 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.


For more information about Sanfilippo Syndrome and Rare Diseases, please visit Abby Grace Foundation, MPS SocietyNational Organization for Rare Disorders and Global Genes.

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