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“Stay strong, Dad”: When your child has a rare disease

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When it comes to caring for children with a rare disease, fathers are often left out of the picture. We want to change that. Here we’ll look at how dads experience their children’s illness.“I will never forget the moment of being told that he was likely to be severely disabled. Sitting in the doctor’s room. Trying to understand the immensity of what is being explained to you. All your hopes and dreams about the life your child is going to have and the realisation that it’s not going to be like that. It’s a shock and takes a huge amount of time to get over it – but we did.”
As the father of a child with a rare disease, you’ve probably felt the shock and confusion that comes along with a diagnosis. Although most research focuses on mums’ experiences, other dads just like you are facing the same struggles.

How does a rare disease diagnosis affect your family?

 “I understand that God’s going to take care of things here, but I don’t know what I’m going to do with my wife if [our child] dies.”

“My family’s needs come first and my needs come last.”

Rare disease can affect a family in many ways. Some dads might feel that having a child with a rare condition has brought them closer to their partner and made their relationship stronger, but that’s not the case for everyone. 

Sometimes the stress of running a family on a tight schedule of clinic visits and treatments can leave little room for spending time with your partner. It can be even more difficult when you’re concerned about how your partner will cope with the shock and uncertainty that you’re both experiencing. 

You might feel that you have to be the more practical parent and shut down your emotions to help the rest of your family deal with unexpected stress. Although providing support for your family is important, remember to take some time to think about your own emotions, too. 

If you’re feeling overwhelmed, it’s OK to reach out for a helping hand. This can come in the form of other family members, a counselor, or other members of the rare disease community. There may even be an online support group just for dads going through the same situation as you.


How do you balance work and family?

“I want to go to everything … basically [I am] just letting them down not being able to be there.”

“I would rather stay home every day all day and help, but I just can’t do that to survive.”

Sometimes you’ll need to discuss who will be your child’s main caregiver. You may have to change work schedules so that you or your partner can provide full-time care. It can be hard if money issues mean you’re not the one who can give the most care. It’s even harder if you have to miss your child’s appointments and would prefer to spend as much time as possible with your family. 

A job with flexible hours or the ability to work from home might let you take part in more day-to-day care and offer a better work-life balance. While we know it’s not easy to get this type of job, you may still find a way – even with the work you’re doing right now. 

How do you cope with uncertainty about the future?

“I’m afraid to be left alone with my sick daughter, because I fear something will happen to her and I could never forgive myself if it did.”

“I can read all I want, but to really understand it I’m going to have to live it.”

As your child grows, you might start to find yourself worrying about their future: Will they be able to join in with other children? What kind of care will they need? 

While some of you might find that knowing what to expect in the coming years can help you plan for the future, it can also be helpful to deal with each day as it comes. Taking it one step at a time can help you focus on the present and avoid being overwhelmed.

What advice do other dads have for you?

“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.”

Even if you feel like there’s no hope, remember that there are many other dads who have been where you are now. Although they’ve experienced the lowest points of living with rare disease, they’ve managed to pick themselves and their families back up.  

“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.” 

You might want to take part in events to raise awareness for your child’s rare disease. Through fundraising and making the disease more visible, you could be paving the way to new treatments and hope for future families like yours.

“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.” 

Although it can be easy to get caught up in worrying about the future and researching the latest advances in treatment, make time for your child and create memories that will last a lifetime.

“Lean on those who have dealt with the disease, for they will be your best resource.”

And finally, reach out to other families like yours in the rare disease community. There are other dads going through the same struggles you’re facing today. Sharing your experience might help them to carry on too.

Sources:

Cameron D. What I learnt from our son’s rare disease. Available from: https://www.linkedin.com/pulse/what-i-learnt-from-our-sons-rare-disease-david-cameron [Accessed 10.11.18]

Ferguson W. To the Dads of Kids Newly Diagnosed With a Rare Disease. Available from: https://themighty.com/2017/02/to-dads-of-kids-with-rare-disease-sanfillippo-syndrome/ [Accessed 10.11.18]

Goble LA. The Impact of a Child’s Chronic Illness on Fathers. Issues in Comprehensive Pediatric Nursing. 2009; 27 (3): 153-162. Available from: https://www.tandfonline.com/doi/abs/10.1080/01460860490497787 [Accessed 10.12.18]

Hayes CC and Savage E. Fathers’ Perspectives on the Emotional Impact of Managing the Care of Their Children With Cystic Fibrosis. Journal of Pediatric Nursing. 2008; 23 (4): 250-256. Available from: https://www.pediatricnursing.org/article/S0882-5963(07)00340-5/fulltext [Accessed 10.12.18]

Rivard MT and Mastel-Smith B. The Lived Experience of Fathers Whose Children Are Diagnosed with a Genetic Disorder. JOGNN. 2014; 43: 38-49. Available from: https://www.jognn.org/article/S0884-2175(15)31501-X/fulltext [Accessed 10.11.18]

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