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How We're Holding On To Hope for Our Child With a Rare Disease

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From an outside perspective, it would seem that our situation, in terms of parenting and caring for a child who’s sick, is very difficult. However, the truth is that this didn’t happen overnight. Like anything else that is handed to you in life, there is a process you go through:

First, you react to the issue.
Then, you adjust your life accordingly.
Then, a “new normal” ensues.

Focusing on What Really Matters

Over the years, we have adjusted our life to meet our child’s needs and adapt to her condition. Our priorities used to be our work, our social life, our athletic activities, our family and our church. Now, however, our top priority and focus is mainly Elouise—maintaining her health, keeping her active, and showing her everything we can in life given her limitations.

For me that is my mission: to keep my daughter healthy and happy.

Coping During the Hard Times

When times have been tough, it has usually been tied to the progression of her condition—specifically when surgery has been required.

Elouise has done very well in each case. Outside of her condition, she is very healthy overall, especially since she doesn’t have some of the more chronic internal or neurological issues that, on an ongoing basis, can be extremely difficult to manage.

As parents of kids with hypomyelination with atrophy of the basal ganglia and cerebellum (H-ABC), we have come together in support of one another and have provided each other with amazing resources to help. We’re able to relate with each other, as we understand the struggles that go along with parenting a child with a rare genetic condition. Moreover, we take every opportunity to learn from one another and share information.

At this point, we as the parents probably know more about this condition than the medical professionals do.

Taking on an Important Mission

In between our focus on Elouise, we are working on trying to figure out ways to expand our foundation’s presence so we can help find a cure, get more attention, and gain national recognition. In many ways, this endeavor is somewhat therapeutic.

I have found there to be so much kindness in this world—in many cases, from people we don’t even know! The number of people who have come forward wanting to help in some way is surprising and truly inspirational.

Holding on to Hope

Lastly, parenting a child who’s sick — especially one who has a rare disease — requires hope. And my hope comes from a higher power. One thing we have come to learn is that you just don’t know what might happen, who might come forward, and how that could help.

We cannot do that without getting the word out and drawing attention to the disease.

Don’t get me wrong, there are days that are dark, and not one day goes by without me wondering what is in store for Elouise and our family. But if you allow that to get the better of you, then you could be losing sight of the good things that can happen.

So if you’re parenting a child who’s sick, try not to give up. Have hope. Have faith.

the parents of Elouise and Elouise, sitting and smiling

This story originally appeared on H-ABC.ORG

Originally published: May 29, 2020
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