It’s so hard to believe that we just celebrated Carter’s 2nd birthday. Its hard to believe that he has been in Heaven for 15 months. Some days it feels like just yesterday when we were leaving the hospital, other days it seems like that was so long ago.
I often try to picture what he would be like. Would his hair still be really light blonde or would it have darkened up? Would he have sprouted up to be tall like his daddy and big sister, or stayed short me? What kind of personality would he have, which traits would he be mimicking from James and I? Would he be best buddies with Alayna…I’m sure they would be.
A few months ago Carters speech therapist Liz, asked us if we would mind her organizing a virtual walk/run in honor of Carter’s 2nd birthday. She wanted to put the proceeds raised into his research fund. We of course said, Yes!
Liz has been a huge support of Carter and helping us raise awareness for Mitochondrial Diseases. She participates in many runs and always uses our Carter shirt as her running shirt. We are so very thankful for her!
I asked Liz if she would mind if we ended the virtual event with a celebration in memory of Carter and to thank everyone for participating. She agreed that would be a nice touch and after many organized group run/walks, as well as, individual participants we did just that.
Last Saturday we hosted a carnival theme party, three days after Carter’s birthday. We had several games and activities, including water guns, water balloons, face painting, bounce house, photo booth, some zumba demonstrations and a live DJ.
Liz’s husband, Chris Terwilliger with Woodland Art, graciously custom made and donated all of the finisher medals for the virtual run participants. He took pieces of our Carter shirt to help design them. They turned out amazing and we are so very thankful!
Though we didn’t have the turnout I was expecting to have, there were many green shirts in the park that day and lots of fun was had by all. Through the donations we received during the memorial celebration and the funds raised from the virtual event, we were able to send this check in as a result of our first ever Carter Lackey Memorial Miles and Carter Lackey Memorial Celebration events! $1,222.13!!
I remember when I first contacted UMDF to work with them, they told me that they had a 3 year goal for each research fund. In three years, they were hoping that you would have raised $10,000, which would be enough for the family to choose a research project to fund with the money you raised.
When the man on the phone told me $10,000 my stomach flipped. He said, if you don’t reach this amount, that is perfectly fine and nothing will happen if you don’t, but that should be your goal in mind. I thought “There is no way we will be able to do that, that is a lot of money!”
I mailed this check out on Tuesday, once this check is entered into his fund, if you go to his online page (www.umdf.org/carterjameslackey), you will find that we will be slightly under the half way goal, IN LESS THAN A YEAR!
We couldn’t have raised this much money though without everyone’s support. I want to give a huge thank you to every single person who participated in the virtual run. I know many of you weren’t able to make it to the celebration for us to thank you personally, but please know that the Lackey family is so very grateful for your support and contributions to our cause.
Thank you to the Terwilliger’s who put so very much time and energy into the Carter Lackey Memorial Miles event. All of the efforts you put into making sure there was many group runs available. All of the documenting and paperwork. All of the time, materials and work you put into hand making the finisher medals, that turned out perfect! Thank you!!
Thank you to Dennis Randall of Top Shelf Entertainment & Nicole Golden from Waverly Fitness for donating your services to our event, it was greatly appreciated!
Thank you to the PA Early Intervention program for coming to set up a table and hand out free children’s books to all the kids. Your program was such a huge help to Carter with all of his weekly therapies. All of your staff was amazing and still keep in touch to this day. I would highly recommend this program to anyone who has children needing therapies. They are the best!
Thank you to all our family and friends who helped me organize, set up, tear down and donate food. You all were a huge help and support as always. James and I are so thankful and love you all!
After doing Carter’s Christmas and now the Memorial Celebration, I’m realizing that I truly love doing these events. They have become almost therapeutic for me. I love working on things in memory of Carter, I love the thought that we could potentially be a part in helping other families. I love how it allows me to focus on the positive things, and the good that is still coming from Carter.
With Carter’s Christmas being 4 months away, I wanted to get on the ball with it much quicker this year. Carters Christmas was thrown together in 1 months planning and we had a fantastic, very successful first year. Carter’s Memorial Celebration we planned in literally 1 week! I wanted to put more thought and plans into each event now that I have a general idea of what I’m doing. I wanted to make sure we had reserved our vendors ahead of time, before they were already committed to other events.
Yet, I was worried to post the event though. I was worried I would hear “Noo, not Christmas its far to early for that!” or my biggest fear…”She is always doing something for Carter, why doesn’t she give it a break and stop asking for support?” I’m always worried about what others will think of me, I would say its definitely a weakness of mine. I didn’t want to be that annoying person on everyone’s news feed that they started to block.
I have put this blog off for days because I just wasn’t sure what else to include in it other than updated information on the events…I want to give you some information on Mitochondria to help put this into perspective and hopefully you can see its from my heart.
For mitochondria being a word not known to many, it really is a major part of your body. Mitochondria exist in nearly every cell of the human body, producing 90 percent of the energy the body needs to function.
Did you know, that according to the United Mitochondrial Disease Foundation, “Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10. Each year, 1,000 to 4,000 children in the United states are born with a mitochondrial disease.”
I know I focus on children, because that is how mitochondria has affected our family…but did you know adults can have mitochondrial disease also? UMDF states some of the common symptoms such as “strokes, seizures, gastro-intestinal problems, (reflux, severe vomiting, constipation, diarrhea), swallowing difficulties, failure to thrive, blindness, deafness, heart and kidney problems, muscle failure, heat/cold intolerance, diabetes, lactic acidosis, immune system problems and liver disease.” Since there are very few specialists in the field, often times a person is misdiagnosed and doesn’t know they have a mitochondrial disorder. Scientists are trying to link Mitochondria disorders to many very common health issues.
The reason I say all of that is to point out that Carter’s research fund is not benefiting us. We may put all of the work and effort into Carter’s Research fund…but unfortunately it’s too late to help Carter. We just know that every day more families are going to feel our pain if we don’t step up and try to help stop it.
Each time we organized an event, I found another family that mitochondria had affected. On Saturday, a man walked up to me and asked if he could still participate in the run even though he didn’t register ahead of time. Of course we said yes, and he handed me his check and asked if it was okay.
When I looked down, I got tears in my eyes as he had graciously donated much more than the event fee. I looked up and said “Thank you so very much, this means so much!!” He said “No,…thank you. My niece has a mitochondrial disease and I have lost a child myself. I have an idea of how hard the road is that your on, and it is my honor to help you and fight for a cure.”
Completely heart breaking.
Yesterday while I was working, I had Pandora playing. I had been thinking and praying about this blog, and once again I feel like the Lord spoke to me through music. The song Speak Life by TobyMac came on. The words hit me in several ways.
“Hope can live or die
So speak Life, speak Life.
To the deadest darkest night.
Speak life, speak Life.
When the sun won’t shine and you don’t know why.
Look into the eyes of the brokenhearted;
Watch them come alive as soon as you speak hope,
You speak love, you speak…”
James and I have been on the other side of the tables. We have been that family sitting in a hospital room, where the doctors are only speaking darkness onto your child, just completely crushing everything within you.. We need to continue to step up so that these families can have hope and a full abundant life!
Another “God wink” yesterday was also shortly after this song played, my Facebook memories popped up on my screen randomly. I didn’t click on them ,nor was it time the normal time of day that they alert me, but they opened on its own. I had a quote I had shared from Christine Cane, saying this:
“The very thing that the enemy uses to try to destroy your life, is the very thing that God uses to help others. God can heal every hurt and can turn your scares into signs of strength for His Glory.”
I do these blogs and events because they help me…but my hearts cry is that through me and my family, we can help others. So even though I have a fear of peoples thoughts, I worry about failure and putting myself out there…its all for a reason. Like I said its not for me. It’s not for Carter. Its for others. If we aren’t a voice, if we don’t raise awareness and funds we aren’t helping the chances of a cure in the future. If I don’t use what the devil meant to destroy me for Gods glory…I feel like I’m allowing the devil to win. And that is NOT an option.
Matthew 5:15
The 2nd Annual Carter’s Christmas is coming December 5th at the Sayre Elks!
For anyone interested in participating as a vendor in Carter’s Christmas, you can find more detailed information on the event page here: https://www.facebook.com/events/910089212404324/
The online vendor application here:
https://docs.google.com/forms/d/1qSM3hHLvOopuoUezolMWIC7wpkDXQwooMTcXQl1pQ6c/viewform
Thank you so very much for all your continued love and support!
Blessings from our family to yours,
❤ Brittany
Carter Lackey's Testimony 