Olivia Little's Story

We are all the same. We are all different. We are all normal. We all belong.

By Erin Little, Olivia’s Mom

Like any parent we all want our children to find genuine and meaningful relationships, so when I received the message asking if Olivia would be interested in being Mary’s pen pal it was an easy yes. Of course, it meant explaining what a pen pal was and shopping for all the nostalgic pen pal supplies.

Olivia has friendships with “normal” kids and by normal, I mean kids that don’t live with a rare disease. She has playdates and is as normal as everyone else that she hangs out with. We have always instilled in our girls that every “body” is different and that’s what makes us all unique. Living in a population of 15,000 people it is highly unlikely that she will find another friend living with cystinosis so we do our best to ensure that she knows that despite her differences, she in fact belongs.

The first letter arrived, and a friendship was immediately started. It was then I realized how important it was for her Olivia to find someone that was different like her. Mary went onto talk about all the things that she loved – riding horses, her family, the color purple and she even managed to throw in one thing she hated, getting her g-tube changed. After Olivia read this line, she had a look of shock with a side of excitement that Mary, like her, has a g-tube. I could physically feel her feel a bit less alone knowing that Mary was like her. There have been many blessings in their kindred friendship, my favorite being that they talk about everything but cystinosis. In fact, Olivia still doesn’t know that Mary has cystinosis like her, we don’t want it to be the purpose of the friendship but instead let them build a meaningful relationship around their lives and then one day they will have each other to get through the hard things that we as parents and other friends will never fully understand.

Melissa (Mary’s mom) and I have been friends for a few years now, their family Christmas card has hung proudly on our fridge since 2018 and it’s beautiful to see our kids organically grow a bond. I can relate to how Olivia will feel one day knowing she has someone “like her” to call a friend. I feel that way about the friendships and bonds I have made over the years attending Day of Hope. Olivia has always loved our trips to California but this year brings an extra layer of hope and excitement since she will get to actually meet and spend time with Mary.

Raising a child with a rare disease has many challenges but we must always remember…

We are all the same. We are all different. We are all normal. We all belong.

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