Dawn and Rolfe Rauscher

Every journey through the world of CdLS is different. Unfortunately, some journeys are shorter than others. When an individual’s life with CdLS ends, their families often continue to lean on the Foundation for support services and guidance. In the past, there were no offerings; however, over the last few years, staff members with a group of committed parents have created a safe and caring world for families who have lost a loved one with CdLS. Below is one of their stories, from both perspectives, Mom and Dad.

Rolfe’s Story

The year 1996 changed our lives forever. We were blessed with a spunky little girl, Nikki. Shortly after birth, she was diagnosed with CdLS, something we were not ready for. We soon connected with the CdLS Foundation and learned of the many challenges she would be facing. However, Nikki seemed to surpass expectations of her. I was a stay-at-home dad, so I was the primary caregiver for Nikki. Nikki and I went everywhere together.

Nikki passed away in 2015 and is in my heart and mind daily. When that happened, I lost my daughter and my primary purpose in life. My grieving process was to shut people out. I would hermit gently and to varying degrees. Interacting and being involved with other CdLS families as Team Nikki helped me open up. Approximately two years ago, I lost my eldest son, who had Spina Bifida and compounded with the loss of Nikki, and it caused me to go into almost total seclusion for about two months. I slowly opened up with the help of family, friends, medical professionals, and CdLS families on social media. Opening up to them, I realized I did have a purpose in life and wanted to carry on with Nikki’s legacy.

Dawn’s Story

Grief is a part of my daily life. There’s not a moment in any day that I’m not reminded of her. Nikki was only a few weeks old when the doctors told us she had a grave prognosis. So, the grieving started then – fear of her unknown future was heartbreaking for any parent to hear. But I couldn’t stop asking, “How do you know what she is capable of? “I told my husband she could grow up and be famous for all we know.

Reflecting on that statement, I see Nikki exceeded all that! She touched an abundance of hearts throughout her lifetime and through social media at the end of her journey. It wasn’t long after her death that I walked into the store and caught a glimpse of the girl’s clothing, and the tears just started – no more clothes for her – we were always told she would win the award for best-dressed child. Over time, it does become a little easier, but I know she is always with me in spirit and often reminds me to leave her pennies – we have quite the collection.

Eight years later, grief still lives in my heart, and every so often, it will leak out through my tears, and I take a moment to reflect and be grateful for the 18 years we had together.


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