Collin McDaniel's Journal
HAPPY 11TH BIRTHDAY, COLLIN!!
Written Jul 25, 2013 8:25am by Lisa McDanielToday, 11 years ago, we received a very precious gift. We knew that sweet baby boy would change our lives forever, but little did we know the impact he would have on so many around the world. We did not know that day how he would suffer, but show grace through it all. We never knew then his smile would be seen through happy times as well as painful, sad times. I could never put into words what this Momma’s heart is feeling today and I would never want anyone reading this to feel what this feels like. Today, our family mourns not being able to celebrate Collin’s 11th birthday with him. Today, it hurts even more than I ever imagined it could. As time goes by, the pain does not lessen and we miss him more. However, instead of burying our heads in the sand with overwhelming grief, we must look up. We must look at the example God set before us and showed us through Collin. Though we are sad and we cry, we know Collin would want us to make a difference, just as he did. My goal today as I mourn him is to make a difference for someone today. Will you join me, please? Happy Birthday, my sweet boy! I miss you incredibly and will always love you & carry you in my heart!
As you all know who followed us throughout Collin's journey, Collin was a very loving and giving child. We have decided to keep Collin's memory alive and continue his compassion for others by starting The Collin McDaniel Hope Foundation. We are a 501c3 non profit charity (meaning we can give tax receipts for donations). The foundation was started to help families with NMO children, to help fund the clinics who treat these families and to educate the public about NMO. We are very excited about this foundation and what we can do to help those families through their journeys with NMO. Our first fundraiser is a t shirt sale. T shirts are $20 each plus $5 shipping (no matter how many shirts) and payment or donations can be made through paypal at email@example.com (please send it as a gift and include your shirt size). You can also email us for more information or to order through check at the same address. Thank you for helping us to help others and keep Collin's memory alive!
Written Mar 26, 2013 9:46am by Lisa McDanielThis Friday, March 29 will be one year since Collin left us. The last year is not describable in words. We have good days and really bad days and somehow, we have almost lived through the first year. We realize a big reason is the prayers and support we have had from our dear, wonderful friends and family. We miss our Super Hero everyday and it is so hard to go about our days without him here. However, Collin is still touching lives. It amazes us to hear the things our sweet boy taught so many of us. We would love to hear your stories as we go through the next few days. Please post in the guestbook or send us an email at firstname.lastname@example.orgAngellyn will be turning 16 in May & she can hardly wait! She is a very busy girl and will be doing color-guard again this year with band. She is excited because the marching theme for next year is Games. Excited because Mario will be one of the songs in their performance!I have had an amazing opportunity this year. I am honored to be working with The Guthy-Jackson Charitable Foundation along with the Collin McDaniel Hope Grant. It is an amazing opportunity. I know this is what Collin & God want me to do. My whole life has been in preparation for this moment and time. I have the privilege to work with doctors, researchers, patients and families to help educate and raise awareness about NMO. I travel to do presentations about NMO, talk with doctors offices, have spoken to churches, civic groups and many other things. God has really opened doors for me to share Collin's testimony, our family's testimony. I am so thankful to have the opportunity to make something good out of the terrible suffering Collin went through. We would much rather have him here with us, but we know this is how it is suppose to be. We still grieve, along with our friends & family and it is not easy, but Collin's impact on this world has been huge and is still happening!This Friday, we will be doing a lighted balloon release in memory of Collin. We have had people from out of town ask about releasing balloons as well. We would be honored to have you release a balloon/s for Collin on Friday where ever you are. We have made little cards we will place in snack size ziplock bags to attach to the balloons. We would love for you to attach one as well to help spread awareness of NMO. I will attach the cards at the end. Also, some have asked what Collin's favorite color was. He had 2, red & blue (Mario colors of course!). If you want to do lighted balloons, Walmart has them in a 5 pack for less than $4. If you release a balloon for Collin, please let us know or even take a pic or video to send us, we would love to hear about it. Also, if you want to write your name on the back of the cards, we will let you know if we are contacted from someone who found your balloon.Thank you all so very much! Please keep us in your thoughts & prayers in the next few weeks.This is the link for the cards. You can print them on cardstock or on a piece of paper, but please put it in a ziploc so it doesn't get wet. Thanks!
Rare Disease Day!
Written Feb 28, 2013 6:54am by Lisa McDanielWe love & miss you, our Sweet Super Hero!!!Written by my dear friend, Nancy Reimer. Thanks, Nancy!!
As I sit here wearing my pink shirt, pink socks and pink shoes to support anti-bullying day, I have to wonder, does it really make a difference. This morning I woke up and regardless of us all in our pink shirts, still refereed the same morning fights between the kids that I always do. We witnessed another girl smacking her brother on the way to school regardless of the pink shirts that they both wore. I think that although it might not make an immediate impact to bullying, in time we will see the message received. I think wearing a shirt or supporting a cause makes us feel like we are doing something...doing our part to make a difference to something that has become a problem. I couldn't help but smile as I saw the kids this morning opening their jackets and comparing their pink shirts. I guess only time will tell the impact of anti-bullying day. I hope it makes a difference and that in time we will learn to accept others the way they are and not pick them apart for not being a carbon copy of who their peers think they should be. I always support any effort in bringing about change to something that has become a huge problem in our schools and communities.
The green shirt is near and dear to my heart. Tomorrow is Rare Disease Day and so another specific shirt day for me tomorrow. The green shirt has become my running companion and my way of trying to do my part to spread awareness about a rare disease, Neuromyelitis Optica (NMO) that entered my life and my home when Riley, now 8 years old, was diagnosed towards the end of 2011 with this disease. I cannot explain in words what it has felt like at times to attempt to come to terms with this diagnosis and I honestly don't know that I ever fully will. When we hold our baby for the first time, we never think that something like this will ever happen to our child and when something like a diagnosis comes completely out of the blue and without warning, it turns your world upside down. After months of fighting against NMO, I realized that I shouldn't be fighting against the disease, I should be fighting for it. It was then that I ordered my first green shirt and ran a Half Marathon in June 2012 wearing it for the first time. That green shirt has covered a lot of kilometres and it has given me incredible opportunities to talk to people about NMO. Sometimes that green shirt is joined by another green shirt worn by my 11 year old daughter, Myah. She amazes me time and time again with her incredible drive and determination to run by my side and make our message of awareness double. Although she may fight with her brother (a lot sometimes), I am so proud that she is also willing to fight for her brother in helping to spread awareness by running with me and through her recent presentation about Neuromyelitis Optica at her school.
So does a shirt make a difference? In my life it has. Today I show my support by wearing pink and taking a public stand against bullying. Tomorrow I will put on a shirt that I have pulled over my head many times now and I will take my place in the fight for NMO. My fight has long ago expanded out of my own home. I have 50 people as friends on my facebook page that either live with NMO themselves or who are Caregivers or family members to someone with NMO. There are many, many more from support groups I belong to as well. Each person is so different and yet we were brought together by a common disease and have learned to rely on each other, support each other, share tears and laughter, and band together to fight for NMO. We have mourned the loss of some precious members of that family together and realized once again the seriousness of the disease we battle. The progress in the last 5 years (thanks to the Guthy-Jackson Foundation) has been incredible. I have to believe we are making a difference. Is it because I put on a green shirt? I don't know what kind of an impact it actually makes, but for me, I feel like however small of a contribution it may be to the world of NMO, that it is something. So to my precious NMO Family...as I proudly pull that green shirt over my head tomorrow, know that it is my symbol, my message to my community that I am fighting for my son and for each one of you. You continue to be my reasons...you are in my steps and my heart and you will continue to be long after there is a cure found for Neuromyelitis Optica...y'all are stuck with me. Your love and support drives me on those days where I don't think I can take another step towards the finish line. It is no longer my victory when I cross the finish line...it belongs to all of us who daily fight and will most certainly conquer NMO. To those who continue to walk this journey with us...thank you...your presence has made a huge impact. If you want to show your support for Neuromyelitis Optica (NMO) on Rare Disease Day tomorrow, please wear green and join the fight!!!
ALONE WE ARE RARE...TOGETHER WE ARE STRONG!!!!!!