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What does CDKL5 Disorder mean for brothers and sisters?

By Karen Utley, IFCR President

How do siblings cope?

A few months back, I was talking to another mom of a child affected by CDKL5 Deficiency Disorder, and she was expressing her concern about her other children and how all of the challenges would impact them.

Without hesitation, I told her that this will make her older children WONDERFUL people. They will be full of compassion and have an appreciation for life that will supersede that of most young adults.

How can I answer this with certainty? Because I have lived it.

I have seen it in my own children.

Of course, seeing Samantha’s challenges was hard on them, but it taught them compassion.

Were there sacrifices made? Yes – and this taught them patience.

Did watching Samantha fight and struggle for every milestone met impact them? Yes, but at the same time it taught them appreciation for every goal and milestone met in life!

I know Samantha has made me a better person. I know she made her sisters better people. I know she has made cousins, aunts, and uncles all better people. These kids are POWERFUL!

Yes, you will all change.

So, as you are holding your head above water, trying to stay afloat, and wondering what all of this will mean for your family, know this: your loved one with CDKL5 can and will change you and your family.

You see, our children with special needs make a difference in this world! They bring absolute unconditional love to people. Their courageous nature is contagious.

They change people.

They make people better.

Take courage and be ready to learn, grow, and change.