Recently a wonderful couple from Kentucky lost their 8 month old baby girl named Sarah Ann McColl due to SMA. Sarah's father, Mike, is a youth minister in Lexington and her mother, Heather, is a minister in Midway, KY. Below is the wonderful, but heart breaking story Mike wrote the night his daughter died about their experience with SMA: Sarah Ann McColl was born on Christmas Eve at 2:57 PM. She came into the world screaming as she was taken out of the warm confines of Heather's womb. Sarah was a beautiful creature that lit up each room that she entered or every time you walked into see her. She wrapped this dad around her finger the first time her tiny hand grasped my finger. Sarah had this striking beauty that drew you to stop and linger with her and to stare into her beautiful blue eyes. Heather and I have known for a while that Sarah was considered a "floppy baby" and was later diagnosed with a general term called Hypotonia, which means that she had low muscle tone. So we started working with an amazing program called First Steps, thanks to a friend's suggestion. Sarah had two amazing Therapists, Gina and April. They taught her to turn her head to the right and left, to hold her head in the middle of her body, to reach out and grasp things with both hands, and to roll over with assitance. In the couple of months that they worked with Sarah, she made great progress and loved her time with them. Heather, Sarah and I got to do a few trips together in her time with us. We got to go to Pittsburgh for Julie and Jonathan's wedding in April where we went to the Zoo and Aquarium and she escorted me into the reception. Then in May we travelled to North Carolina to see family and to watch me and Aunt Laura, along with Jon and Julie to run a Tri at White Lake, while there she got to dip her toes into White Lake. She also got to travel to Christmount, Grandparents Houses in North Carolina and Indiana. She also attended her first General Assembly in Indianapolis where she met her Cousin Amanda. Sarah went to the neurologist two weeks ago and was tested for various things including a genetic disorder called Spinal Muscular Atrophy. SMA is a degenerative disease that has different types. Sadly, we are still waiting on the results from this test and Heather and I will be tested as carriers of this also. Sarah was tested for Type 1, which is for infants and is fatal. One of the issues, with babies with Low Tone is that they are not able to get a good cough and to get stuff out of their throat. Last Friday, August 14, Sarah had a cold and was stuggling to breath so Heather took her to the emergency room at UK Hosptial and she was admitted to the Pedatric ICU. She was on oxygen and an IV drip and Antibiotics for possible Pneumonia. Saturday and Sunday she was doing better and we were working to bring her home. On monday, she had a set back and the middle lobe of her right lung had collapsed. She was put back on High Flow oxgyen to help reinflate her lung. At this point we started to talk about keeping Sarah comfortable and not in pain. So on Wendesday morning we met with the UK Pallative Care Team and Daniel's Care, a part of Hospice for children. At this point, our doctors were pretty sure that she had SMA and we were looking for the best care possible for Sarah. Yesterday afternoon, around 12:15 PM she went into Cardiac Arrest. The PICU team did CPR and brought her back to life. At that point we knew that it was time to make her as comfortable as possible. We removed her oxygen and her NG tube and we got to hold her and talk to her and she was passed from family member to family member. Heather and I got to lay down with her and talk with her and she slept on my chest all night long. This morning about 7:00 AM we made the decision to bring her home and she calmed right down. Heather and I got to walk with her out of the hospital and feel the breeze blowing across her face and brought her home where we were able to give her a bath, put on an outfit from Costa Rica and a Lady Bug Dress, she loved her Lady Bugs. We also got to put her in her swing and to see her dog Jake and some of our cats. Daniels Care came to our house and started the process of her care. Sarah was hungry and so we offered her some milk and after that small taste she quietly and quickly with no struggle and no pain walked over to sit in God's Arms where she can sit up, crawl and run. Our little Sarah bear, left this world to God's world at 12:50 PM. These wonderful people are doing what they can to bring awareness to this disease. Please help them in memory of their beautiful daughter.

Chloe Bush came into this world a healthy, amazing baby girl, with a 10 Apgar score. She went home with her family to enjoy this new life that they all had embarked on. There were no indications of anything being wrong with her until her family noticed she wasn't meeting some milestones such as holding her head up or rolling over. Their pediatrician sent them to Birmingham for some testing when the family found out the news that Chloe was diagnosed with the #1 genetic killer of children under the age of 2, SMA. It is then that they would find out this disease has no treatment and no cure. They were told to count their blessings each day because only 50% of these children live beyond 2, and even after that, it is a day to day basis. Chloe Bush has fought these odds and turned three years old on September 13, 2009. She is on a ventilator 24/7 (complete respiratory failure since she was 7mos old), eats through a G-tube, has breathing treatments every 4-6 hours with a cough-assist machine, Albuterol treatments and a suction machine where her parents have to suction all the saliva that she is aspirating constantly throughout the day. Her parents change her position throughout the day and night since she cannot move (at all) to keep her from getting sore. She has O.T., P.T., Speech Therapy, Playgroups amongst other regular follow ups. SMA does not affect her cognitive abilities and most Neurologists have confirmed SMA children are actually SMARTER than average. Chloe is starting to read with a special device where she uses her eyes in conjunction with the computer and likes to keep up to date on all the popular children’s shows that are out today. We need the general public to know this disease!!!! www.fsma.org/chloescarnival2009 http://www.caringbridge.org/visit/chloebush

My daughter was diagnosed 3-11-2009 with type 1 which is the most svere type.We almost lost her in june due to respiratory failure. doctors not knowing the proper protocol for our children when they get sick and have to be addmitted into the hospital.Doctors ways of "fixing" them is sending them home with trachs and not giving them the proper support them need.This is a serious disease and doctors should know about SMA.Its the leading disease to kill children before the age of 2.Please do a show to spread awareness of SMA.The world needs to know of this disease and help parents to be get the proper testing done while/before getting pregnant.Please Please Please help spread awareness! Heather~Kaydens Mommy

A dear friend has recently lost her son to this devastating disease. Before he was diagnosed, we had never even heard of SMA. How can that be?! It is the #1 genetic killer of infants and children under 2 years old! People need to be made aware of this deadly disease, so they can be tested BEFORE they become pregnant. Please air a show on SMA dedicated to all the children lost and those still fighting so that more people will know about SMA.

Doctor, Please do a show on the number one genetic killer of infants under 2. My son Kaige was diagnsed at 3 months old at Lucial Pakard Hospital @ Standford with SMA tpe 1. one in 40 are a caririer and there is no cure! My son was the front runner @ Packard for a study that used Hydroxyurea. He was the first baby to take part in that trial. My son is now 6 years 4 months old. He is unable to move his limbs or trunk .He eats 18 hours a day via G-tube and sleeps and rest and relies on a Bi-pap machine to breath. He needs asstiance on coughing and has breathing treatments every 4-6 hours or every 2 hours as needed with chest pt. He has lost the ablity to smile, but you can see he is charm through his eyes. Right now SMA is one of the closest diseases to finding a cure for. They say with in the next 5 years we will be able to not only stop the progression of this horrendous daily life threatening disease, but put an end to it all together. They say that stem cell research will be the cure for SMA. This is a disease that strips children from the joys of life when they have the mental capacity to absorb it all. I also feel that this is a preventable disease that with more knowledge before conception SMA can be avoided all together. Please take the time to look at SMA (spinal muscular atrophy) and not only help our community for children and adults who suffer with this but help people be aware that they themselves may be that one in 40 that will create a child with this life changing disease.

My grand-daugher has Spinal Muscular Atrophy Type 1 and we live in IL. She will be 6 years old in a few weeks. We travel to Stanford (Palo Alto,CA) to see a doctor that had done studies on a drug that has helped stop the progression on her disease. We also see the best doctor for SMA in the world (in my opinion for SMA ) DR.Mary Schroth in Madison,WI. among a few local doctors from time to time. You need to do a show that would help other doctors actually understand SMA. How vital these Kid's care is from respiratory care, diet and the physical therapy etc. A lot of these kids are not given a chance to survive. My daughter was told to take her home love her she will not be here in a year and at the most 2 years. She is also on donor breast milk in her amino acid formula fed Via g-tube (at age 6 )that has also helped her stay healthy and do well. She is our miracle. ******* You need to get AWARENESS out there on how to care for these kids and give them the best quality of life they can get.

My daughter has SMA Type 1. The number one genetic killer of infants under 2!!!!! yet no one knows about it....including Doctors. Please, there needs to be more awareness.

My vote is for my nephew Andrew Butler who was taken from us at just 20 weeks old....too many health care professionals had no idea what we were talking about, and we as a family had also never heard of it. There needs to be more information available about this devastating disease. Unlike so many other illnesses that have hopeful treatment options, that is not the case for SMA type 1 especially. These babies just slowly slip away and you cannot stop it. Please get this information out so people are aware of this disease.

My son Andy was born on January 8th, 2009. A bouncing baby boy, he had initial Apgar scores of 9 and was just like all newborns, hungry and beautiful. Two days after his Christening we took him to a Pulmonologist to get a sweat test performed to rule out Cystic Fibrosis. After he had the test we met the ARNP and she noted that he was "floppy" and wrote a working diagnosis of "hypotonia" in his chart. We had been noticing a decrease in movement for a little while, but as first time parents we did not realize that this was unusual. After we went home we researched "hypotonia" and nearly had a heart attack. We took him to the emergency Pediatrician who noted his distended abdomen as not "gas" but as "abdominal breathing" and sent us to the emergency room. He was almost a week in hospital on that first visit and we left with a working diagnosis of "Werding-Hoffmans Disease or Spinal Muscular Atrophy - Type 1". That diagnosis was confirmed on March 17th, 2009, St. Patricks Day. Through a total of five hospital visits, G-Tube surgery, swallow tests, cough machine tests and a myriad of blood tests, our brave little fighter lost his battle on June 4th, 2009. This was our first child. We now have a one in four chance of having another baby with SMA with each future pregnancy. There is data out there stating that 1 in 30 are carriers but the incidence rate is almost identical to Cystic Fibrosis, yet nobody appears to have heard about Spinal Muscular Atrophy. Even Physicians, OB/GYn's haven't heard of it. how is that possible? There are many stories just like this one all over the country and as we are finding, all over the world. How many cot deaths are undiagnosed SMA or SMA/RD babies? How many SMA deaths go unreported because it is too devastating for the families? How is it that the treatment for SMA, Type 1 in particular is so antiquated? These are some of the questions that need to be answered and that can only start with bringing attention to the condition on a national level. I believe that your show can be the leader in putting the spotlight on this condition. In the memory of my son, Andy and the countless other SMA families, thank you for your consideration and the opportunity to highlight this terrible disease. Alan Butler, Tampa, Florida.

My beautiful daughter Adora was diagnosed at 4 months old with Spinal Muscular Atrophy type 1. She had been having trouble swallowing. She did not move or kick vigorously, did not grab for toys, and could not hold her head up by 4 months old. I noticed her breathing pattern by 2 months was still not regular. She would also wake up each morning from sleeping all night completely soaked from head to toe including the bed. We later found out this was CO2 build up from shallow breathing. These babies have to use their diaphragm to breath. They could breath best when lying flat. The muscles used for breathing and moving arms, legs and holding up their heads begin to deteriorate or die after they are born. My daughter Adora had respiratory failure at 7 months old. She was placed on a ventilator and was given a g-tube. In addition to not being able to swallow, SMA kids cannot break down large proteins so they are placed on special formulas via g-tube such as Neocate. I have been fortunate enough to have been able to keep my daughter at home on this ventilator and she is now 8 years old. She is very bright and interactive. She uses eyegaze to make choices and communicate with people. She has a special switch she can use to operate computer games, toys and loves to bounce balloons with her working hand. It is hard to see your child in such a way, but the alternative is even harder. I am so fortunate to still have my angel Adora. I know that all the other families dealing with this disease cherish each and every day we have them with us. These kids are true HEROES. There is currently no treatment or cure for Spinal Muscular Atrophy. By showcasing it on a major television show watched by millions of people would increase the awareness of this horrible disease. The families dealing with this disease and the kids who fight it would greatly appreciate your support.

We lost our beloved grandson, Andy Butler when he was just 20 weeks old. This show would help so many people become aware of this #1 genetic killer of children under 2. There are 3 types of this disease with type 1 being the most severe. That is what our grandson had. For these babies who can not talk for themselves, we feel a program on your show would make so many young couples aware that this could happen to them without any warning. We certainly had no history of anything like this in our families. Please do this show. Andy's Brokenhearted Gigi and Grandpa Perry

My daughter Avery was diagnosed wit type 1 SMA at 5 months old. She has had pnemonia a couple of times and worked through it with the help of good doctors,proper knowledge and the right equiptment,such as the cough assist. She was in the PICU for 3 weeks the last time,doing the respiratory treatments with the cough assist and suction every 2 hours around the clock, but she fought it off and is doing great and growing like a weed! These kids can live past 2 years old. I have personally met an 11 year old with type 1. Awareness and proper doctor knowlegde can change the statistics that you read online. Hang in there to all of you parents living with a child with SMA. Thank god for every day you have with them. Each day is one day closer to a cure!

My best friend's grandson, Andy, was diagnosed with SMA at 6 weeks old. He lived to be 5 months old but he touched many, many lives in his short but meaningful life. SMA is a horrific and uncureable disease that needs to have more research funding so that a cure can be found which would spare all children from this terrible disease.

Innocent human beings are losing their life to Spinal muscular atrophy. If it doesn't affect someone's circle of friends /family directly, we wont have knowledge of it. That's why we need to be aware of this disease. Maybe by having this on your show it can shine some light on the disease and people will support organizations and fight for a cure!!!

Our daughter Lucy is almost 8 months old and living with SMA type 1. She is our first child, and we had no idea the disease even existed, just like most people. It is dangerous that this disease is so unknown, since 1 in 40 are carriers of the gene mutation. Lucy cannot sit up, roll over, hold her head steady, eat by mouth, breath on her own while sleeping, or cough. Despite all these obstacles in her life, she is happy and loving. She enjoys bathtime, when she can move her body due to the buoyancy of the water, and she loves being read to. Lucy is blessed; she can still turn her head side to side while on her back and has movement in her arms and hands. We pray every day for a cure, but in order for science to get there we need awareness, because awareness = funding, and SMA research is sorely lacking in that department, with most of the money being raised by families affected and their supporters. Please, even if we don't get enough "votes" to qualify, for the lives of our children still on earth, to honor those who have passed too soon, and to save the lives of the children yet to be born, do a show on Spinal Muscular Atrophy to help us raise awareness of this cruel disease.

Your program would be the perfect platform to educate people about this devastating disease. My grandson has been diagnosed with type 1 and was given a 2 year life expectancy, he will be one this month. No one in our family had ever heard sma. We need to have doctors explain to couples that they could be carriers and that there is a relatively inexpensive test that they can take to let them know. The more people made aware, the more funding will be available and the sooner we can have a cure. The NIH has stated that sma is the closest to a cure but funding is the main stumbling block. They also said that sma research is like a gateway to finding cures for als, parkinsons and others. So let's get people informed and put funding in the hands of the researchers and get a cure. Then, maybe my grandson will be able to live a full and healthy life. I can only hope

SMA needs to be discussed and known about . My 4 month old neice has been recently diagnosed with SMA and it's heartbreaking. I nor anyone I know has ever heard of this or knew how OFTEN it can happen to family and precious little babies ................. PLEASE HELP !

Failed to mention, I did full time care with little nursing help for 16 years. Know how and where to go for help as a parent of a handicapped child.