GiGi’s Playhouse 5K – Team Ella Grace
“and though she be little, she is fierce” We have all heard this quote, When we hear it sweet and spunky Ella Grace jumps in our mind quick! This little lady is a warrior, so do not let that pretty tutu fool you, she just makes warrior look pretty. Before we jump into learning more about Team Ella Grace we wanted to introduce you all to her. Her mom and dad have shared her great big story with us…..
“After a very tough pregnancy and finding a heart issue at 30 weeks Ella was born at 36 wks. with a coarctation and complete AVSD…that is also when we found out that she had a little something extra to for us to love. She stayed in the NICU until a month old and then she got transported and had her first surgery, after many complications she went home at 2.5 months old for everyone to finally meet and hold. Then 5 days later ended up in the hospital for another month and a half and had a feeding tube placed. At 8 months old she had her first open heart surgery. In October 2013 they found another heart issue, subaortic stenosis which called for another open heart surgery in April 2014 and was there for a month due to complications once again and had to come home on oxygen. She now has a pulmonary issue but has been taken off of the oxygen for the time!! That surgery was “supposed” to hold up for 5-8 years…well guess what, the way our luck goes, at her echo in June we found out it is back and she is going to need another surgery most likely within the year. Due to her failure to thrive every three months she has her feeding tube replaced which seems like nothing but due to her heart and lungs it makes it risky. She has a lower immune system and gets sick pretty easily so most of her first 2 years she was in the hospital with illnesses and infections and has been in a few times here since. She is a fighter and definitely keeps us all on our toes. She knows how to brighten anyone’s day. She’s an angel, a blessing, a miracle…she has been through more than most adults and is stronger than anyone I know.”
Wow! what a little lady! We at GiGi’s are always so happy when Ella can come visit and we are thrilled to have Team Ella Grace joining us this year!
1. Which team are you representing and what is your relationship to the team?
We represent Team Ella Grace. I am the team captain and mom of our beautiful, extremely energetic 4 year old daughter.
2. Is this or your team’s first time in the GiGi’s Playhouse 5K? What made you want to join?
This will be our second GiGi’s Playhouse 5k. We missed last years due to Ella’s immune system that doesn’t like to always agree with us and she was on oxygen…..we tend to miss out on a lot of things due to her health but we try our hardest to make it to anything that is an event related to Down syndrome.
3. Why is the GiGi’s Playhouse 5K important to you and your loved one,or what does it represent for you?
The 5k is important to us because it’s a time we get to represent “Team Ella Grace” and let everyone see how important she is to us. We love how everyone gets together and is a big family, it is one of the only times that we get to see some people that we keep in contact with. It amazes me to see the love and support that people show at these events for our perfect beauties.
4. Why do you think that GiGi’s Playhouse is important to the Syracuse community?
GiGi’s is important because it has so many resources for everyone, it does not matter if your pregnant and finding out that you have a gift about to be born and you need information and people to lean on or if you are an adult. I love how they offer programs and events for people of all ages. Where we live we are extremely limited on anything that has to do with helping us with what we need. GiGi’s has also supported us when Ella has had her heart surgeries..they are extended family and we all need that!!
5. What’s your teams fundraising goal and how are you achieving it?
There has been so much going on lately that we were late starters this year…so honestly, we did not make a goal. But we are trying to raise money by letting everyone know through email, texts, phone calls and of course facebook!!!!
6. Is your team planning anything unique to show your team spirit?
We have Team Ella Grace shirts that we had made. Ella’s is of course pink with a crown and a saying, her sisters has a saying, Kyle’s and mine has our own and then everyone else that ordered one has the same saying. Besides that…you never know what we will do (if I can talk people into it haha)
7. Is there anything else you want people to know about the playhouse or about Down syndrome awareness?
I know with us it has a been a journey, one I wouldn’t change for anything. Every single minute is a blessing with her and never taken for granted because she has been through so much and will go through so much more. She is a miracle. Every milestone makes us even more proud than the one before….
Go Go Team Ella Grace! We are very proud of you!
To help support of Join Team Ella Grace go HERE
To learn more about the GiGi’s Playhouse 5k, Fun Run/Walk & Dash for Down Syndrome visit HERE
