SMA it FORWARD with CASHEL
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Deirdre Medina 8/7/07-10/22/12
Deirdre was born in Puerto Rico. She had a respiratory arrest at 4 months, and was diagnosed with SMA Type 1 in the hospital. She was intubated and the doctors gave no hope for her survival. We fought to get a catastrophic funds air ambulance, and she was taken to UMDNJ where the PICU doctors and DR. Bach saved her life. She was extubated to bipap on the third day of her arrival! She had to stay in NJ to get all the care that would have not been possible back in her homeland. It was a really hard thing to do, as we left all our lives back home (friends, family, jobs, pets...)... but it was all worth it.
Four years later, Deirdre is a happy, sassy and very demanding Diva. She is very inquisitive, uses eye-gaze to communicate, loves Disney movies and Wonderpets, doing arts and crafts, watching book readings in You Tube, and going to field trips. She recently asked to go to an animation studio, and so she went to meet the Little Airplane crew and to learn how the Wonderpets show is created! She loves aquatic animals, has a pet turtle, and enjoys playing with her Figit Friend. She will go in Summer to the Camp Jr at the Newark Museum, will turn 5 in August, will start Kinder this Fall, and by the end of the year she would go to meet Pocahontas and Mulan at Disney.
Deedee doesn't let SMA slow her down or stop her. She can do anything she wants, and we make sure to give her the tools to do so. Where there is a will, there is a way. Deirdre's website: www.deirdremedina.com.
Here's a pic of Deedee at the Ability Expo on May 5th.
This is Aubrey Lyden. She lost her battle with SMA type 1 last April 2011. We are doing everything we can to help raise awareness in her memory.
My name is Amanda Cardoze. I was diagnosed with SMA Type 1 when I was 6 weeks old. I passed away May 13th at 21 months old from a respiratory complication. My mommy and daddy miss me very much but they were awesome parents to me and I did so much in my short life! I got to feel both oceans, I rode a helicopter, I went to the zoo, I swam in many pools, I loved to paint, I went to music class, I danced, I went to many birthday parties, I snuggled with mommy and daddy, I went to a picnic, I was immensely loved, and I just had so much fun here on Earth!
I am now in Heaven having even more fun because here I can run and sing freely! I have many friends up here who were just like me on Earth but are now free of SMA.
Never forget me!
Princess Chloe September 3rd, 2006 - December 18th, 2011
Princess Chloe came into the world on 9/03/06, full-term and weighing 6lbs 14oz & 18-1/2 inches long. There were no indications of anything being wrong with her until we noticed she wasn't meeting some of her milestones such as holding her head up or rolling over.
We were referred to a Neurologist who confirmed the diagnosis of SMA type 1 with a genetic test. 1 in 40 people carry the gene that can cause SMA but both parents must be carriers (99% of the time) to have a 1 in 4 chance of having a child with SMA. 1 child out of every 6,000 - 10,000 children born (around the world) are born with it. There are several types; Type 1 being the most extreme.
Spinal Muscular Atrophy is not curable or treatable. It affects the voluntary and involuntary muscles in her body (in layman's terms) her muscles shrink and die and she will get weaker and weaker with time- and will never improve. She cannot swallow (aspirates everything including saliva), cough, eat, move, talk, play or breath on her own.
SMA DID NOT AFFECT HER COGNITIVE ABILITIES. Most Neurologists have confirmed SMA children are actually SMARTER than average- which makes it 'fun' to keep these angels entertained!!! ;)
She was on a ventilator 24/7 (complete respiratory failure since she was 7mos old), ate through a G-tube, had breathing treatments every 4-6 hours with a cough-assist machine, albuterol treatments, suction machine, ( where I had to suction all the saliva that she is aspirating constantly throughout the day).
We changed her position throughout the day and night since she could not move (at all on her own) to keep her from getting sore. She had O.T., P.T., Speech Therapy, Playgroups amongst other regular follow ups .
MOST Important facts are SHE LOVED to be read to, watch Cartoons, go for runs with me pushing her in her wheelchair, be held, loved to interact with her eyes (she was a professional eye-roller), bath-time and swimming and LOVED being LOVED!!!! Just like any other 5 year old girl.
We loved her very much and were determined to do all we could to keep her here and happy. She was a quiet, sweet-tempered angel who has changed our lives- to the extra-mile and she taught us what LOVE is!
All was well with Chloe until one day, December 18th, 2011 after her tubby time, she closed her eyes and went to sleep forever. Forever a 5 year old Angel.
We miss her dearly and hope a cure comes soon so that other parents won't have to endure this pain.
Thank you for reading Chloe's story and maybe you will tell someone about SMA type 1 and if more people are aware then maybe one day there will be a treatment or a cure!
Aiden lived his life to fullest for four year, nine months and three days. Those days were full of mischievous grins, giggles, eye rolls and finger tapping. Even hours before his sudden death, he was laughing and rolling his eyes at me when I told him not to yell because it was rude. Our Biggie was the type of kid that always rooted for the villain, hence his love of all things Dr. Doofenshmirtz on Phineas and Ferb. Our hope that Aiden?s legacy is one that shows that children with SMA are not looking for pity but acceptance; that he was a normal almost five year old in every regard except he couldn't move or talk. SMA took a lot from Aiden but it never took his smile or his over the top personality.
hi cashel..my name is alanna and died from sma type 1 when i was 4 and 1/2moths old.. mymummy and daddy and the rest of my family loved me so very much. i was very little when i went to heaven but really had a herat of gold.. i loved bananas in pyjamas and toys that had pretty light and sounds.. my mummy thinks you are an amazing young man and thinks that your family is beautiful.
Brooke Leigh Binning
I lost my sweet precious Brooke Leigh Binning a little over nine years ago to SMA type 1. She was the most wonderful part of my life and had left with many AWESOME memories and legacies along the way even to this day. She passed away when she was 4 in a half years old. To this day I miss her even more as I did as when I first lost her but have total faith that she is with my Lord and Savior Jesus Christ and doing ALL the things that she was not capable of doing here on this Earth and so much more.
Thank you so much for having this page where we can all share together all the wonderful faces of SMA... God bless each and everyone of you :)
Mackinley Neil Hardison
Mackinley Neil Hardison
DOD 11-24-10 SMA1
Son of April Hartman
Grandson of Lyman and Beth Horne
Brother of Kyli and Paige Hartman
Aunt Meredith Horne
What a Blessings he was to us then, and continues to each day (even though he is no longer here in earth,). These children are a Blessing everyday. They teach us so much, if you will just get to know them. Praying for each one effected by SMA. Great video, show a little of what goes Ian each day.
Thanks Cashel for doing this wonderful thing for SMA and wanting to include Kaitlyn. I am sharing a picture of her when she was 3 years old. Kaitlyn was born on April 24, 2002. She was a happy little girl. She did so many wonderful thing in her life. She loved to be outside. She went camping, went to summer afternoon day camps with her brother and I, played t-ball one year, loved to go swimming that is why she got a hot tub for her Make-a-Wish and loved Dora the Explorer. Mostly Kaitlyn loved her family and she wanted nothing more than to be with them all the time. IT was very hard to take Kaitlyn out and about so when we did those were very special times. Kaitlyn enjoyed watching her school friends via web cam everyday while her teacher's aide came to our house. She loved her computer just like you do. Kaitlyn earned her angel wings on January 19, 2011, at 8 3/4 years old.
Baylee Grace Peterman
Our precious daughter Baylee Grace was born on 01/27/05 and passed away from SMA Type 1 on 04/17/2006 at only 15 months of age. When she was born we thought she was a perfectly healthy baby, then we noticed her movement slowing down & she was moving forward. We then took her to doctor for her 8 weeks check up & that is when we got the news that no parent would ever want to hear "Just love her as much as you can because she will not make it to her 2nd birthday", we were absolutly horrified. Baylee touched so many people's lives in her short time here especially mine, it was the best 15 months of my life & I made everyday count in the time God let her be with me including starting the Alabama Chapter of FSMA. She never once lost her beautiful smile! :) Thank you so much for what you are doing Cashel ♥
Antonio Pineda Jr
this is my beautiful little guy Antonio Jr he would be 1 years old now. he was born with sma type 1 :( we had never heard about this horrible genetic disease before till i had my little guy. we where at the hospital will him the whole time he was there for all most two months and they were the best two months of my life he taught me everything and showed my the best love that i have ever felt before. he was a little fight right from the start. he tryed so hard to move his little arms. i never give up hope. some days were very scary but we just enjoyed every minture and every moment that we got with him. my baby boy had such beautiful big eyes i have ever seen i looked into them all day long :) he was such a happy baby even with all his tubes and mechanics that was around him. he loved his monkeys he had everything monkey stuff. and he love it when his mommy and daddy were holding him :) that was one of the best ♥♥♥ he was born on February 21, 2011 - April 6, 2011. i love you so much my little and miss you soooooooooooooooooooooooo much more and more everyday. xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxooxox
Linnea Grace Lee
Hi, My name is Linnea Grace and I was born with SMA type 1. I had the sweetest personality and big soulful eyes. Even though I only blessed this earth for 13 months, my family and friends cherish each moment they had with me and are so happy that I am free of sma in heaven!
This is RJ. He was born feb. 17th 2003 and at 2 months old was diagnosed with type 1 SMA. On june 9th 2003 at only 4 months old he passed away peacefully in his sleep. Its been 9 years now and we still think about him everyday and miss him so much. He was such a happy, easy going baby and his eyes just spoke to you! His little sister Alli is 17 months old and also has SMA, I believe RJ watches over her and keeps her safe:) we miss him so much and can't wait to see him again someday♥ if you want to know more about RJ, Alli and there journey with SMA feel free to check out thier site at www.our-sma-angels.com/alliwilliams
Hi Cashel, my name is Summer Hayes. I died from SMA1 in April 2011. During my 9 months and 10 days of living i used to smile all the time. I had and still do have lots and lots of people that love me more than life itself. I think your SMA it forward idea is brilliant! Lots of love to you and the rest of the SMA community, Summer Carol Lynn Hayes xox
August 20 2012
I am sorry to have to post that today one of our SMA Warriors is now an SMA Angel :(
Aleigha Michelle will now be forever 10 months.
I know you will be missed so badly by your big brother Cayden, your mom and dad and all your family.
Please send your prayers to Aleighas family. I am so sorry I wish this NEVER had to happen to any family!