It's not an easy road
Olivia was our first child. I was the type of person that tried not to have too many expectations as to not be disappointed but we all have our normal expectations when we are about to have a baby. I thought that we would go into the hospital because I was having contractions, I’d deliver vaginally, and we’d go home a couple days later and adjust to our new family. At about 34 weeks, Olivia was flagged as being small for her gestational age and we started getting ultrasounds a couple times a week. I started to realize that normal was going to be different for us. At 36 weeks, Olivia was born via unplanned C-section and then proceeded to be in the NICU for 21 days. Between the NICU and Olivia not being able to breastfeed because she was too little and too weak, the experience threw me into a depression. After 3 weeks we finally left the hospital and I was so excited to bring my baby home but as time went on I just couldn’t fully connect with her. Each day made me feel more and more like a failure as a mother. What was wrong with me that I didn’t feel connected. In May 2015, 6 months into Olivia’s life she was diagnosed with Wolf Hirschhorn Syndrome. For a mom that was already having a hard time, this was a blow that would make me go numb. My husband learned everything he could about WHS and called everyone he could find to figure out what to do next. I stayed off the internet, afraid of what I would find. I would say it took me 6 months to come out of the hole I went into. When I finally adjusted to my new normal I started to think about how I could help Olivia, other than the therapies and spending time with her trying to connect I felt like probably most parents do that I had to DO something. There had to be more than just accepting her diagnosis. I joined the WHS Facebook group and then learned about the support group for WHS. I decided that helping to fund raise for the support group would be where I would start. I called the group and discussed with them that I wanted to fund raise for them and asked what the funds would go to. As we spoke I realized that not much research for treatments for children like Olivia was occurring. I realized that if I wanted research to happen I needed to do something. In June 2017 I ran a 5K in honor of Olivia, my first 5k ever, and donated the money to the support group. While I ran that race I decided I would take the giant leap and start Liv4TheCure. I can’t even explain how giant a leap this was for me. I had never done anything like this before. I was a high school math teacher and then moved into the software industry. I didn’t have experience in business or fundraising or event planning, but it didn’t matter, I had a passion to help my daughter. I did the paperwork, I found the board, I started planning events for fundraising, I navigated a road that I had never been down before. Between the end of 2017 and all of 2018, Liv4TheCure has put on 11 fundraising events and has raised enough money to put together a symposium of scientists to talk about chromosomal deletion therapeutics.
This road has not been easy. I have heard so many NO’s I can’t count. I have been criticized for starting a new nonprofit when another one existed. I have had events fail and connections not work out and I have spent countless hours working in addition to my full-time job on making this all happen. BUT I will not give up. As I have gone to conferences and talked to scientists I am realizing that the possibility of a CURE, yes, a CURE for chromosomal deletion syndromes is not a far-off possibility. People are so afraid of the word “CURE”, but curing our children is not about changing who they are. It’s about giving them the best life that they can have. It’s about finding treatments to help them live better and yes there really is the possibility that in our lifetime we will be able to replace the missing genes. It’s like strep throat. If your child had strep, you would treat it. You would fix the problem instead of letting them get sicker and sicker. Why would I sit around and watch my child suffer from seizures, not be able to walk or talk or express how she feels to us. I want all those things for my child.
As we end our second year of Liv4TheCure and begin our third I am more hopeful than ever in what we can accomplish. I have learned so much in the past two years and I will not give up – EVER.