UP CLOSE WITH JEANIE By Jeanie Summerville
Whatz up, babies?
To all of you mothers, I hope you had a happy Mother’s day and you were made to feel as special as you truly are. As for me, it was beautiful, simply beautiful. On that note, I also think it was beautiful that someone, who will remain anonymous, took it upon himself to contact me to shine the spotlight on someone for Frost Illustrated readers’ public awareness. And, I think that’s so beautiful because that gives us an opportunity, on our journey of love, to feel some more love and help benefit the situation if we can and I’m so proud of him for bringing this to my attention. He shared that this young lady has a disease known as spinal muscular atrophy or for short, S.M.A.
SMA is a neuromuscular disease that is the leading inherited killer of children under two and there is no treatment or cure for it. But, many children with SMA have above-normal intelligence and their hearing, sight and facial muscles are not affected. SMA is one of the most prevalent genetic disorders. One defective gene alone won’t cause this disease—both parents have to be the carriers.
SMA affects motor neuron cells which control the body’s voluntary muscles from the head down. He also said, little is known concerning her condition and this is an awareness of what is truly the unknown and the strides that she has made are totally unparalleled.
So now, we bring to you this week’s spotlight so that you can meet this wonderful young lady and her mother and this is what her mother has to say:
“Hello, Frost Illustrated readers. My name is Celia Reed and I’d like to share with you about my daughter, Ta’Bria Neosha Collier, who was sent to us lovingly and by special delivery Nov. 28, 1994 in the city of Kokomo, Ind. However, we’ve been here in Fort Wayne now for almost five years.
“What our family is trying to do is to honor and raise support for Ta’Bria because she’s going to accomplish one of the biggest achievements ever, not only for herself, but also for a lot of children that were diagnosed with SMA. She made it to see 18 years of age and will graduate from high school this month and wasn’t even expected to live past the age of two.
“What’s going to happen at her graduation is, awards will be given out to all of the special needs class. They will receive a certificate of completion, as well as, other awards that they’ve earned throughout the school year. I’m kind of excited about this graduation because one of the things that Ta’Bria initiated, in her junior year, was we introduced Skyping to the school system and therefore somebody Skypes with her for about 20 to 30 minutes everyday. What that means is, she has her iPod, which is like a computer with a camera attached and they’ll tell her what the lesson is for the day, they’ll read her a story for the day or they’ll have parties where she can participate. The party on the other end cannot actually see her eyes blinking to answer the questions but the party on her end can and relays it. She loves Skyping in her hat and sunglasses and she has done a great job.
“We think it’s quite an honor that she lived beyond what the medical community had said and not only that, she suffered two anoxic events, one when she was four years old and the last one when she was 10, which did irreversible brain damage and so she doesn’t speak. She communicates by eye blinks and eye movements. She can wave to say hi, we just have to hold her arm up and it is a progressive disorder so there have been some changes.
”Ta’Bria was diagnosed with SMA when she was six months of age and we were told that she would never sit, walk, crawl, wave, have any head control and would eventually lose her ability to swallow and breath and ultimately not live beyond her second birthday. SMA is the number one genetic killer of children under the age of two and there is currently no treatment or cure and this disease affects one in 40 million Americans and about eight million are carriers. One in every 6,000 babies is born with this devastating disease and it comes in different types. Ta’Bria has the severe form and this one is terminal.”
“So let’s Walk and Roll on May 25 from 11 a.m. to 3 p.m., at Kreager Park, in Fort Wayne to fight SMA. We’d like for you to come out and support Ta’Bria as we celebrate her biggest achievement yet, her high school graduation! Free tee-shirts to those who raise more than $50. There is a $2 registration fee. There will be door prizes, a petting hour for the children and much more! All proceeds benefit families with SMA and it’s an international organization whose primary focus is to find a cure and it’s helps families, like us, to support one another and it’s a day of fun and activities. This will go towards Ta’Bria’s goal because it’s her honor walk and the state walk is in August. For additional information, directions or to receive a pledge form contact firstname.lastname@example.org or email@example.com. I know that a lot of people may look at this as difficult and sometimes it’s hard watching and accepting what’s going to happen in the future and sometimes we may even be fearful of what lies ahead but we think that GOD’s love can go a mighty long way, so come and share it with us.
“We’ve lost so many friends but their testimonies have kept us inspired and Ta’Bria keeps me inspired and I’ve learned that being different is not a form of weakness but a test of extraordinary strength and courage. I think being well-loved helps too. So, we decided what better way to move beyond what we can see today and make a difference in her tomorrow by walking for that cure. Because I love her, I love her so much and I live with a miracle everyday. She brings immeasurable joy to my heart and all the things I’ve learned, I would have never learned if not for her—such as, when the doctor’s said no, a higher power said yes. She taught me don’t give up. It may be hard but it’s not hopeless because I’m here but just in a different way. She radiates love and patience just the way she is and she doesn’t complain about anything. This photo of us was taken at her 18th birthday celebration last November and she is quite the fashionista. I’ll ask her if she wants to wear this or that and she let’s me know by her eye blinks.
“As far as, how she interacts with others, we took her to school for her Thanksgiving party and we we’re only going to be there for half an hour. So while we were there I made sure we visited all the tables with all the kids and we left. The nurse went to get the van and I was with Ta’Bria in the hallway and I heard all of this commotion behind me. I couldn’t figure out what was going on but here comes her Skype and reading partner, who is also a special needs student, running down the hall because he wanted to give Ta’Bria a special goodbye and I thought nothing about it. I just got tickled because I thought that was sweet. Then the time came for the Christmas party and this same student disrupts the party because he wanted Ta”Bria to meet his daddy. And, the present that he gave her was a picture of him telling her Merry Christmas and I think that he’s connected to her because they Skype together and it’s amazing to watch and learn.
“If you’d like to learn more about Ta’Bria, she also has a website on fswww.fsma.org. Click under support, then click on the link to photo’s and under the photo link it will say link to other websites of children, when you click on that you’ll find her name and that will take you to her page.”
So now in closing I say, HEAVENLY FATHER, thank you for Celia and other mothers like her. It pleases my heart to meet and greet them and to feel the love and beauty within their hearts. I hope, that I will be able to attend Ta’Bria’s walk and I also hope that I’ll be able to see some of your beautiful faces there as well, in the name of love. So until next week, when the spotlight shines on Mrs. Grace Coley RN MS and president of First Crown Health Care Inc., you’ve been Up Close with Jeanie. Bye bye, babies.
P.S. If you would like the spotlight shined upon you or someone that you know, all in the name of love, just send me an e-mail to firstname.lastname@example.org. I’d love to hear from ya.
This article originally appeared in our May 15, 2013 issue.