|Our daughter, Ava Mae Kloiber, was born on March 23, 2007 and at 3 weeks of age was diagnosed with an incurable genetic disease called SMA (Spinal Muscular Atrophy), Type 1. The doctors told us she would be with us for only 6 months to 1 year, and we made every moment with her a lasting memory. Ava Mae earned her angel wings when she passed away at the age of 7 months.
Ava Mae was a blessing to all and continues to impact people’s lives. Her spirit and will to live continues through the 2 heart valves she donated to 2 infants upon her passing, and also through our family dedicating ourselves in her memory and honor to find a cure for this terrible disease!
Shelley & Jeff (parents to Ava Mae) are lucky enough to have a second daughter, Sydney Ava Kloiber and son, Noah Christopher. Sydney & Noah are both healthy children however, both are carriers of SMA. They don’t have the disease, but it could affect their children if they marry a carrier (1 in 40 ppl). It is our goal to help find a cure for SMA before their child-bearing years so that they don’t have to endure the hardships of dealing with this disease.
We miss Ava Mae every day, and her absence is felt in our heats every day, but we know that she continually watches over us and her spirit & courage lives on in her siblings and through us.
It took 3 years, but we finally finished putting together a video of Ava Mae’s life. You can watch it below or by copy/pasting this link. http://www.youtube.com/watch?v=pPMsKlgg3lw
We wanted to share Ava’s beautiful smile and her life with everyone.
Some Quick Facts on SMA:
-FACT 1: YOU could be a carrier!
-FACT 2: Spinal Muscular Atrophy (SMA) is the number one genetic killer of infants
-FACT 3: It is an often fatal disease that destroys the nerves controlling voluntary movement, such as, crawling, walking, head and neck control, even swallowing
FACT 4: One in 6,000 babies born is affected with SMA
-FACT 5: 1 in 40 (some statistics show 1 in 32) people are carriers of SMA (it takes 2 carriers of SMA to birth a baby with SMA)
-FACT 6: There are 7.5 million Americans who carry the gene which causes SMA
FACT 7: YOU can help!
It is Team Ava Mae’s commitment to help secure funding & resources so that no other families have to endure the hardship of their child passing away from SMA.
We now ask you to help find a CURE FOR SMA!
Please donate to Team Ava Mae in memory and honor of my daughter.
Sincerely, Jeff & Shelley Kloiber
Fight for Ford pledges to raise $5000.00 for Spinal Muscular Atrophy Research. Ford Sniezek our son was born a healthy baby and passed all his newborn screening. We were so excited about starting our family and what the future held for our little boy.
As his parents we noticed that he was not meeting developmental milestone and they sought out the help of their pediatrician. Ford’s pediatrician sent Ford and his family to a neurologist at Children’s Hospital in Pittsburgh PA. We saw 3 separate specialist that day, they took Ford’s blood and we left the hospital with nothing more than the doctors telling us we would have an answer in 4 to 6 weeks. When we arrived home Ford’s pediatirican called and said the hospital thought Ford had Spinal Muscular Atrophy which was something that we had never heard. We asked what was ahead of us and the doctor told us that Ford would most likely live 2 years. We chose to drive to Philadelphia and see Dr. Finkel who ran an SMA clinic to get Ford’s diagnosis confirmed. On Feburary 3 2011 our world came crashing down when Dr. Finkel told us Ford did have Spinal Muscular Atrophy type 1. He did not however give us NO HOPE. He told us that children with SMA were living longer with being proactive and fighting.
So after Ford’s diagnosis our family knew that we had to fight for our son and fight against this horrible disease. We became connected with SMA community and learned of Dr. Kaspar’s Gene Therapy program and how promising his research was in finding a cure for SMA. Our family decided to start holding fundraisers that all took on the name “Fight for Ford”. We started our Fight for Ford website www.fightforford.com and we are dedicated to raising awareness of Spinal Muscular Atrophy and funds to help move SMA research in finding a cure and that is why we want to make the commitment to raising $5000.00 for the Gene Therapy Program.
A baby named Avery came into the world about 5 months ago, she was born with SMA, please learn about Avery here www.averycan.blogspot.com ..Sadly Avery passed away yesterday, as you can imagine her parents are devastated. Avery’s dad called me this morning to tell me the news and to say that Avery’s last wish was for Dr. Kaspar’s Gene Therapy program to get into SMA KIDS. You can imagine hearing this broke me up as well…..Please offer your condolences to little Avery’s family and friends. On her blog Avery’s dad said he didn’t want Avery to die in vain and would make sure she didn’t ….well I can speak for the whole community that everyone will know the impact this precious girl had on the world and SMA!!!!! EVERY DONATION THAT COMES IN TO SOPHIA”S CURE FOUNDATION IN AVERY”S NAME WILL BE MATCHED BY AN ANONYMOUS DONOR.. UP TO $500,000.00!!!!!!!!
UPDATE : August 16, 2012 $403,339.07 has been raised in AVERY’s NAME for promising Gene Therapy Research!!!!!!!
Meet Drew’s Team
Yes, it takes a village and Drew has the very best! The following list includes 20 of the professionals that care for Drew and keep him healthy and happy. This holiday season we recognize these individuals for their expertise, creativity and compassion by contributing $50 in each of their names to Sophia’s Cure. We thank them for caring for Drew and all the other very special children.
Dr. Heidi Arnold
Dr. L. Condon
Dr. John Garcia
Dr. Nancy Kammer
Dr. Steven Koop
Dr. Paul Kubic
Dr. Scott Schwantes
Dr. Michael Shreve
The Sydney Craven Family
Sydney was diagnosed with Type I SMA at the age of 6 months and we were assured she would not live to age two. But here I am, trying desperately to think of what to get her for ninth birthday that’s coming up in a few weeks. It’s just not that easy coming up with gift ideas for a child that can’t move or sit up or hold anything in her hands or lift anything. Sure, there’s the usual items that always work – some new movies; a couple fresh outfits that I’ll buy in the same size as I did last year; a song and a birthday cake she can’t eat. I wish I could think of something better.
Sydney wants things all the time, but they’re things I can’t just wrap up in a box. She wants to wash herself in the shower and hang her own clothes up in the closet. She wants to rub the corners of her own eyes when they need it. She wants to turn her own head to the window to find out if it’s raining or if it’s just cloudy. She wants to take a deep breath without an ambu bag. She wants to be alone in a room without being afraid that she’s alone. And me? I want her smile to come back because I really miss it. I want to stop being afraid that she’ll die, or worse, that just maybe, I’ll die before she does and she’ll be left here alone. And just once, I’d really like to buy her something fun, like a pair of roller skates.
Even with all the challenges that SMA brings, sometimes it’s things like thinking of a good birthday present that seems the hardest. But Sydney’s entire family has already given her a wonderful gift this year – one that she doesn’t even know about and probably never will – a donation to this research project in her honor. I’m deeply grateful to Sydney’s loving grandparents, great grandparents, her aunts and uncles, my own aunt and uncle and extended family, all of whom pitched in to make this donation possible.
The truth is, after nine years, I have very little hope left that anyone or anything is going to ever make spinal muscular atrophy less brutal than it is. But with the last shred of hope that remains in me, that last piece that I’m trying not to let go of, I’m so thankful for the generous support of my family and for the love and attention they give, and have always given, to Sydney. I think all of us know that I’ll never get to buy her roller skates, but maybe for Sydney’s tenth birthday, if God grants it to her, I can tell her that something really amazing is just around the corner. And if I can’t ever say those words to her – if no hero ever comes to excise SMA from our lives – then I’ll still know she lived not without heroes. Sydney and I have a whole family full of them!
I am so happy to have met the 200 Commitment Goal my family made but I would never have made it if it wasn’t for the generous and caring Antonopoulos Family. Tina and her daughter Noel wanted to stay anonymous but I am so happy they extended an email to me to introduce themselves because I have made a true friend that has such a huge heart and cares for not just Cashel and Allie but ALL our children fighting SMA.Sandy GardnerTina and Noel AntonopoulosIn Honor of Cashel and Allie GardnerAnd All SMA ChildrenFor it is in giving that we receive.” St. Francis of Assisi.We live in a society with so many ways to communicate. Social networking has allowed people to be more aware and more capable of communicating and helping each other. It is a beautiful thing. As complicated as life has become, one thing has always been plain and simple-giving.I have been a giving person all of my life. In fact, I am happiest when I give. I taught both of my children to always be grateful and give back to the world. That is what God wants us to do. I thank God that He allowed me the gift of giving and receiving through the Gardner family and the SMA community.My beautiful daughter Noel, who is 14 1/2 years old is a big fan of Criss Angel. Over the course of about two years, Noel has been a loyal. At first, she was amazed with his talents. Over time, she became amazed with the man Criss truly is, a caring, giving man. Noel found out about this through a beautiful and special boy named Cashel Gardner. Cashel and Noel are the same age. Whenever Criss would do or say something to Cashel and Noel would come across it, she would always mention it to me. We were both always so touched by what we heard.One day Noel came to me and told me that Cashel’s mom, Sandy Gardner, had a birthday wish to collect money to buy IPADS for children with SMA. This past summer, I asked Noel to go to the site where Sandy was trying to raise funds from. I wanted to see her progress. She still needed a certain amount of money to be able to buy one IPAD. I immediately decided, without thinking about it, that I wanted to make Sandy’s birthday wish come true.Who would have thought that helping to buy an IPAD would flourish into a beautiful friendship? I gave a little and I received so much more. Sandy began educating me on SMA. As she was telling me all she endured to take care of her two beautiful children, Cashel and Allie, she said one great thing to me and it has stuck with me to this day:” I don’t feel like my life is a burden. I am doing what God wants me to do…..take care of his children.”That night, after I heard that beautiful statement, I stayed up questioning God -what I can do to help Sandy, on a personal level, and even further help the SMA society on a wider spectrum? Sandy and I discussed how a doctor was raising funds for gene therapy earlier that day. Sandy was trying to raise $5000.00 to give to that fund. That night, I decided I was going to gift that money to the fund. No questions asked. No doubts. No ifs, and or buts.When I told Sandy the next day, she was in shock. We had spoken a few times on the phone, and communicated a handful of times through emails. Why? and How? were the questions. My answer was why not? I felt for her and her children. I felt for Sophia. I felt for all the children that needed an IPAD to make it through the day. I wanted to help and I am glad I did.I extend my well wishes to all the families who have children with SMA. Anything is possible with love and determination. Don’t give up. There are others like me out there helping to ensure a better quality life for children with SMA, and perhaps a cure one day. I will help you fight this fight. I am a mom and I know what it means to want to be able to give your children everything they want and need. My heart goes out to all the families and my thoughts and prayers will always be with you always.Cashel touched my heart from thousands of miles away, from his bed, tweeting on his computer. God works his miraculous ways through everyone. Everyone has a purpose. Every child has a gift. Cherish every moment with your beautiful children. God lives in them. You can see it in their eyes.God Bless All the SMA families and their beautiful children.My part was small. What you have all done for me and my family is priceless.Blessings,Tina Antonopoulos
Our little miracle, Kennady, entered this world June 15, 2010, weighing 7 lbs 2.5oz and she was 20.5 inches long. During the pregnancy Kennady was VERY active, and when she was born she was a strong baby and was able to hold her head up when lying on our chest. Kennady was full of life and smiley all the time.
A couple weeks after we came home with Kennady we noticed that her left arm wasn’t moving very much. Afraid maybe something happened at birth that we didn’t know about, we decided to closely watch her movements. By her 6 week check-up we mentioned to the doctor that she seemed very “floppy”. Kennady no longer wanted to hold her head up and would cry through “tummy time”. She wasn’t moving her legs very much and didn’t seem to want to move her arms to play much either. Kennady also had fast and heavy breathing. We were expecting the pediatrician to tell us that we held her too much and cuddled her too long in our arms. But, instead of the doctor saying we needed more opportunity for her to play, we were admitted to Children’s Hospital in Milwaukee and found out our little angel had Spinal Muscular Atrophy(SMA) Type I. We had never heard of this disease. We were devastated that our little girl had such a horrible disease and prognosis. They told us it was unlikely she would live to her second birthday. We decided from that point on that we would do whatever possible to make her comfortable and make her feel as special as possible. Her contagious smile lit up the room and our lives every day. Kennady has been an inspiration to us and many friends and family members.
Kennady was a very content baby and rarely ever fussed. She started and ended her day with a big grin. Her favorite things were Mommy, Daddy, Mickey Mouse Clubhouse, the Disney Princesses, the movie “Tangled”, swimming, and playtime. She loved anything that played music or lit up. Kennady got to meet Santa, went to the zoo, and even traveled to Florida to meet Mickey, Minnie and the Disney Princesses in person! We knew our time with Kennady may be cut short, but we promised to help her live her life to the fullest.
There is no heartache like losing your child or seeing them suffer through a debilitating disease like SMA. However, if Kennady could wake up every day with a smile despite any challenges she had, we could wake up with a smile and be positive, too. Kennady deserved a happy environment and we wanted her to know how special she was and that she was the center of our world. Kennady changed our lives forever and taught us so much about loving, living, and appreciating life. She was a perfect blessing and we loved her more than anything.
Just a few weeks shy of her first birthday, Kennady passed away in the privacy of our home. Kennady was surrounded with the love of her mommy and daddy as God welcomed her into His world. We are dedicated to help find a cure for SMA. No child should have to go through what our daughter endured. She deserved to have a long, happy life. Kennady should have been able to crawl, walk, run, jump and grow up to have a family of her own. We find peace that she is with God surrounded by a love that we can only dream of, and we look forward to being with her one day in heaven. But for now we will continue Kennady’s fight on earth. So in memory of Kennady, and in honor of all the SMA warriors and angels, we would like to help fundraise to help find a cure to end SMA. Dr. Kaspar’s Gene Therapy has given us hope that one day there will be a cure for SMA and no child will have their time cut short on this earth due to Spinal Muscular Atrophy.
To learn more about baby Kennady and the events going on in honor of Kennady visit her site. www.kennadysdream.org
Sydney came into this world as a precious gift. A gift of love to her parents, a gift of friendship to all those lucky enough to have known her, a gift of courage and hope to all those that will continue to be moved by her memory. When we think of Sydney, we remember her infectious smile, her bubbly personality, her charm and wit, and most of all, her determination and will to live every day to the fullest. She inspires us to live fearlessly, to embrace every wonderful moment and really experience it. She inspires us to love each other despite our limitations and to help one another. She was always defined not by her disability but by all that she had to offer the world – she always wanted to know “how can I help?” She had a wonderful capacity for giving. If only we could all try and see ourselves and others the way Sydney did. She will continue to inspire us to live and love and to never give up. Sydney came into our lives bright and brilliant – forever changing us all….We love you and miss you, Sydney, with all of our hearts. Thank you for the gift of your presence in our lives….it was truly a privilege to know you. ~Kathleen Salus
This beautiful tribute was written by SMA Mom Kathleen Salus. The Salus and Potjer families were extremely close and Kathleen’s daughter Sophia and Sydney were the best of friends. Sydney will be missed by our entire community. May we all learn life’s lessons through the teachings of this beautiful SMA Angel. In memory of Sydney, $1580.00 was donated to The 200 campaign.
The results came back a week later, and in August of 2008, our world changed forever. Peyton was diagnosed with Spinal Muscular Atrophy. At the time we had never heard of SMA, but from what the Dr. told us, it was not good. We were told that Peyton would not live past the age of two, so we were to take her home and love her. Terrified, confused and lost, we went home. Instead of giving up, we, with the help of our family, have also started the fight of our lives!! We are going to fight as hard as we can, until the cure is manufactured.
Peyton has had many ups and downs over the past two and a half years. She has been hospitalized three times for respiratory illness. She has lost her ability to swallow, so she had to have a feeding tube put in her belly. Her muscle weakness continues to worsen, and it has also greatly limited her ability to speak. Her list of daily machines has also grown. Cough assist, bi-pap, and the pulse ox, machines are just a few of the them that are necessary for her.
While everyday, Peyton struggles and faces all these challenges, she also smiles!! Peyton is a feisty little girl, who loves her parents, and big sister. She wants to play Dora and watch movies. She is just trapped in her own body. Peyton and so many other children are affected by this rare genetic disorder.