Celebrating Inchstones: Mito What 5K

Saturday, March 26, 2011

Mito What 5K

It was a dark and stormy morning.....

That is NOT the way you want to begin the long awaited day of a huge 5K! And don't even get me started on the fact that is was now 40 degrees with a windchill in the upper 30's! But still, we got everyone up and headed to Millington for the 2nd Annual Jackson Culley Mito What? 5K at 6am!! We drove down the interstate in wind and rain while praying for clear skies for race time!

We got to Millington, picked up our registration packs, unloaded a canopy to keep us dry and waited for the race. During all of this the rain had turned from a full rain to light drizzle and then stopped by race time!!! At 9am, there was NO rain! It didn't pick back up again until the last of the runners were coming into the end zone!!! Praise God!! It wasn't exactly 70 and sunny but it was warmer and dry! Thank you Jesus!

Now, I had been wavering between doing the 1 mile fun run/walk or the 5K. I finally decided on the 5k but then the trip to Houston completely knocked me out of any running and training. Mostly I just sat in a van or in the waiting room the first part of the week. I still kept my goal though and was just gonna walk the 5K. As we started out though the kids were wanting to run so off we went. We all ran and walked for a while. Then the kids kinda dropped off and I really wanted to see how well I could do if I tried. So after the first mile I ditched the kids and took off! I finished the 5K with a time of 41 minutes! I'd really like to think that I could have done better if I'd started out really trying. In reality I probably would have only shaved off a few seconds! Still I'm pretty proud that I finished at all!! And I should add that the track was well marked, lined by volunteers and police escorts and Cade and Gracie were with my 19 and 14 year old nephews. I didn't totally ditch them in the middle of nowhere!

The best part of the day was seeing all the people who turned out for mito. There was over 350 signed up before the race and 50 who signed up this morning in the cold, wind and rain!! And the last total I heard was $17,000!! $17,000 was raised and sent to the UMDF for mito research! Can you believe that!!! I can't imagine how much work it must take to organize such a hugely successful race! All that is because of Cindy Kraft and Angie Hayes! The story of how these awesome ladies found Jackson Culley and mito is amazing. And these ladies work their hineys off to raise money for a cure for a disease that they had never even heard of 2 years ago. It isn't everyday you meet people who give so much and ask for nothing in return! Thank you so much Angie and Cindy.....and their amazing friends and family who help out and make everything run so smoothly!

I love to see my mito friends and today I met a new family. They are from Millington and lost their daughter to mito (specifically Leigh's) in 1987 when she was 6 1/2. In 1987 there were only 50 known cases of Leigh's in the world, according to the dad. Can you imagine?! They didn't even know what was wrong with Jessica or what took her life until a year after she passed away. And we think mito is unheard of now. I can't imagine trying to find answers and doctors when there were so few documented cases. It really makes me feel like I'm making a difference by raising awareness for mito. I hope this family is proud that we are working so hard to help spread the word about mito so maybe no other kids have to be taken by a disease with no name!

Thanks to all those who sponsored me in my quest to be a Mito Hero! And thanks to our family and friends who turned out in such yuck to walk/run with us!! Can you believe I didn't even take a single picture?! Oh, well there's always next year!

2 comments:

gg said...: WooHoo...to both $17,000 and you finishing the race!!!!; March 27, 2011 at 7:09 PM
Clarissa said...: awesome! $17000 to UMDF is great!!; March 28, 2011 at 7:07 PM

Post a Comment

Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!