The following families impacted by SMA have committed to Unite For The Cure to give Dr. Keirstead’s groundbreaking science a chance to cure SMA:
Bill, Victoria, and Gwendolyn Strong – California
Bill and Victoria Strong live in Santa Barbara, California with their daughter, Gwendolyn. Gwendolyn was born perfectly healthy in October 2007, but was diagnosed with SMA Type I at 6-months-old. The Strongs are passionate about raising awareness of SMA and their foundation, the Gwendolyn Strong Foundation, is centered on funding research that is solely focused on curing this cruel disease. In July 2008, they started PetitionToCureSMA.com, an online petition in support of legislation that would help organize resources around the extremely mature SMA research community — to date, their petition has received over 70,000 signatures. In August 2009, the Strongs started “Tweet For A Cure” (EndSMA.org/twitter), as a simple way for people to Tweet their Congresspeople about the SMA Treatment Acceleration Act — to date, over 2,500 people have Tweeted their Congresspeople reaching over 1.5 Million Twitter followers. Bill and Victoria feel fortunate to have met with Dr. Hans Keirstead in July 2009 and were astounded by his accomplishments, his research, his facility, and the very real potential of his groundbreaking efforts ending SMA once and for all. The Strongs wholeheartedly believe this clinical trial will lead to a cure — IF given the funding — and they created Unite For The Cure in August 2009 to motivate the SMA community to band together to make certain that funding is not an obstacle to seeing this promising research to and through human clinical trial as quickly as possible. Uniting with others to take funding out of the equation is simple — in comparison to the devastation caused by SMA. And, Gwendolyn’s bright spark is a constant motivator to continue fighting for that cure.
The Butler and Trakas Families – Florida
The Butler Family: Andy Butler was diagnosed with Type 1 SMA or Werdnig-Hoffmann Disease, when he was just nine weeks old. As the disease progressed, it quickly robbed him of his ability to move, suck, swallow and breathe. The disease took his life on June 4, 2009, leaving his parents, Audra and Alan Butler, devastated. Andy passed away four days before his five-month birthday; SMA robbed him of his chance at life. Before his diagnosis, the Butlers had never heard of SMA, and now it is their mission to prevent other families from going through this nightmare. Audra Butler serves on the board of the Greater Florida chapter of FSMA and is very involved in fundraising and grassroots outreach efforts. She also created “Andy’s Army” on Facebook to help spread awareness and to raise funds to support the “Unite for the Cure” campaign. Although a cure won’t save Andy, it will save other lives and serve as his legacy.
The Trakas Family: When the Trakas’ second daughter, Andrea, was born, she seemed to be perfectly healthy. When she was 7-weeks-old, they began to realize that she wasn’t holding up her head and moving around the way her older sister did at that age. After several months of tests, the dreaded diagnosis was confirmed: Type I SMA. SMA was not new to the Trakas’. Their best friends’ 15-year-old daughter has Type I SMA as well, and she has defied the odds with her tremendous strength, courage, and faith. It is still beyond their understanding how two lifelong friends could each have daughters born with the same genetic disease. Andrea was so happy and loved her 7 months of life and had an extraordinary impact on so many. There would be no greater joy for her family than for a cure to be found so that other parents would not have to endure the same difficult journey. The Trakas’ have been involved in many fundraising activities in support of SMA programs — long before Andrea was even born. One of their biggest and proudest accomplishments is the building of the “Andrea Trakas Memorial Playground” in the Tampa Bay area. This handicap accessible playground built in Andrea’s memory is a playground built “for all children”, and is state of the art. They know how many children will enjoy this facility for many years to come. The Trakas’ strongly believe in the potential that stem cell research has to treat and cure SMA, and they are honored to part of Unite for the Cure and partners with the Butler Family.
Rita Wright and Jason Beasley – Texas
Rita Wright and Jason Beasley welcomed son Eli into the world on August 2, 2008. A beautiful, happy baby, he was their lives’ greatest gift. Soon after birth he began experiencing health issues that kept them going back to his doctor for advice — although nothing that caused alarm. However, a few days after the Christmas holiday, that changed as Eli had a scary choking incident that sent the family rushing to the emergency room. The specialists there told Rita and Jason that their son had SMA and a hopeless prognosis. It did not take long for SMA to ravage Eli’s body and on January 14, 2009, he passed away peacefully in Rita’s arms. Since then, they have met many other families who have been affected by this horrible disorder and have created a foundation, Through Eli’s Eyes, to offer SMA awareness and support. Rita and Jason are determined to help find a cure for SMA so that no other parents are given this horrible diagnosis.
Keith, Hillary, and Avery Schmid – Pennsylvania
Keith and Hillary Schmid were blessed with twin girls, Avery (pictured on the right in the picture) and Zane (pictured on the left in the picture), in January 2009. They were overjoyed! When the girls were about one month old, they noticed Zane was not moving her limbs and head as much as Avery. Zane was diagnosed with SMA Type I on February 19, 2009 just 6 weeks of age. As Zane grew older, the disease progressed. She lost more muscle control, had low tone throughout her body, and then lost the ability to swallow. She had to be fed through a G-tube that was surgically placed into her stomach. After a 27 day hospitalization in the PICU, Zane passed away peacefully in her parents’ arms on June 18, 2009. She was 5 months, 16 days, 1 hour, and 3 minutes old…TOO YOUNG! She was a beautiful baby girl with big brown eyes and a magnetic personality. Before Zane’s diagnosis, the Schmid’s had never heard of SMA. Now, with their families and their community, they are determined to bring awareness to this horrific disease and to be a part of the SMA Community that is striving and praying for THE CURE. They created the website SweetBabyZane.com originally to keep people informed of Zane’s progress and daily routines. Now, the website serves as a source of information about SMA and of upcoming fundraising events in Zane’s memory. Keith and Hillary do not want other families to experience the pain they have felt of losing a child to SMA, therefore, they are members of Unite For The Cure.
Christy, Kenny, Laura, and Sara Greene – California
Christy and Kenny Greene’s daughter, Sara Rose Greene, has SMA Type I. She is dependent on a ventilator to breathe and requires full time support with every bodily need and life activity. Over the years, support for the family to handle this horrific disease has come from Families of SMA and SMA Support. The Greenes would not be where they are today and their precious daughter would not have the quality of life she has without their support. In the past, they have participated in “Walk-n-Roll” events in Riverside, California to support Families of SMA. They are extremely excited about Dr. Kierstead and his SMA stem cell program and are proud to be part of Unite For The Cure to help raise the funds necessary to get this research and promising CURE to human clinical trials as quickly as possible. The Greene’s HOPE is in GOD and this SMA stem cell program. May the day come very soon that each baby born with SMA can have a much healthier and higher physical quality of life than those that are born with SMA today.
The Potter and Reilly Families – Massachusetts
The Potter Family: Mark and Laurie Potter’s son, Marshall, was diagnosed with SMA Type I when he was 8 weeks old. Sadly, he passed away at just 4 months & 6 days old. Remembering how difficult it was to gain insurance approval for the necessary items he required to stay comfortable, the Potter’s wanted to do something to help families dealing with the same thing. Within a year after they lost Marshall to SMA, the Potter’s teamed up with the Reilly family and Connor’s Fun Run and formed a non-profit organization called “Marshall’s Miles” in support of SMA families and research for a cure. They are committed to doing as much as they possibly can so that they may live to see a cure for SMA. While it is too late for their own son, it is not too late for the many children who are still living with SMA, as well as those who will be born with it in the future. The Potter’s are very excited about the progress that is continually being made for people who have SMA. It is an honor for us to be a part of Unite For The Cure!
The Reilly Family: Bill and Karen Reilly’s third son, Connor was born in 2002. He was diagnosed with SMA Type 1 at 5 weeks of age. Connor is a happy 7 year old who tele-commutes to school via web conference. Connor is dependent on a ventilator to breathe and requires full time care. A number of years ago the Reilly family teamed up with the Potter family in raising funds for the foundation that Mark and Laurie created in memory of their son Marshall. The mission of Marshall’s Miles is to support families that are dealing with SMA as well as raising funds toward the cure. The current mission that Dr. Kierstead and his SMA stem cell program is on, is the first one in 7 years that sounds very promising. Over the next several weeks, we are committed to a letter writing campaign to help support Marshall’s Miles commitment of $5,000 for the Unite For The Cure!
Shawna, Josh, and Kayla VanderZanden – Oregon
After a year and a half of trying to conceive a child, Josh and Shawna were devastated that it may not ever happen for them. They felt like it wasn’t fair that their dream of having a family was now going to be turned into costly fertility treatments and painful procedures. They made an appointment with a fertility specialist and as soon as they made it they found out they were pregnant. The VanderZandens welcomed their daughter Kayla Grace into the world on April 21, 2008; they couldn’t have been happier! Unfortunately, on November 10, 2008 Kayla was diagnosed with SMA. They were told Kayla’s condition would only progress and would result in a very short life — at 7 months old, based on SMA statistics, Kayla’s life was almost half over. Over the last nine months the VanderZandens have learned to hold onto hope that someday a cure will be found and their daughter will have a chance at the life they thought she would have — filled with ballet classes, soccer practice, etc. The VanderZandens have joined Unite For The Cure to give that hope to all families impacted by SMA.
Jeff, Jessica, and Nicholas Gustafson – Washington
Jeff and Jessica Gustafson were overjoyed to find out they were expecting their first child in the Fall of 2007. Several months later at a routine ultrasound, when they found out they were expecting a boy, they started planning a future full of the things they love to do as a family: boating, camping trips, riding at the sand dunes, and Jeff couldn’t wait to teach his little boy to shoot hoops. However, their dreams for their adorable son, Nicholas, were shattered when he was diagnosed with SMA in April 2009 at 10-months-old. The Gustafsons were crushed at the severity of Nicholas’ diagnosis. They mourned the loss of a lifetime of moments they would never get to experience with him. Before Nicholas’ diagnosis, they had never heard of SMA and neither had the people closest to them. They started a blog to keep their family and friends up-to-date on Nicholas’ battle with SMA: FamilyWithGusto.blogspot.com. Nicholas was diagnosed with SMA Type II, which means that, fortunately, his health has not yet started to decline. He has limited movement, but is a very happy, social, and intelligent little boy. He is the light of their lives and they are committed to finding a cure for their son and all children impacted by SMA. The Gustafsons have faith that by participating in Unite For The Cure their child will receive the treatment he needs to live a full, healthy life and that all the dreams they had for him before his diagnosis, might just come true.
Kristen and Mike Lucas – Canada
Kristen and Mike Lucas have been blessed with 3 beautiful daughters: Calla (5), Maya (3), and their sweet Georgia. Georgia was born (at home!) on October 6th, 2008 appearing healthy and perfect. She was welcomed by her two big sisters, who always made time to play with their ‘baby sister’. On March 16, 2009, Georgie was taken into hospital because of pneumonia and she was not improving. On April 1, 2009 they received the devastating news that she had been diagnosed with SMA Type I. Kristen and Mike took her home on April 3rd to be close to her family, especially her big sisters. Georgia’s last days were filled with joy and they will never forget them. On April 21, 2009 she passed away peacefully in Kristen’s arms. The Lucas family joins Unite For The Cure because they still believe in miracles and they believe that the cure is near. They don’t want anybody else to ever have to go through what they did.
Jen and Jerika Bolen – Wisconsin
Jerika was born a healthy baby girl on December 21, 2001. As a single mom from day one, Jen had her challenges — but never had she experienced a love like the love she has for her only child — the child Jen lives each and every day for! Little did she know that 8 months later she would be told she would lose Jerika far before she had a chance at any sort of normal life. After being diagnosed with SMA Type II, Jerika underwent a 5 hour surgery to have two different feeding tubes placed and spent her first Christmas and birthday with Santa visiting her in the hospital. That was only the beginning of Jerika’s hospital stays and surgeries and the Bolens new life facing and battling this life-threatening disease each and every day. This past June, Jen and Jerika attended the Families of SMA conference in Cincinnati where Jen was able to get more information on Dr. Kierstead and his research. Jen is more than convinced that stem cells are the answer for SMA and that Dr. Keirstead and his team will forever change the course of this disease. Jen truly believes that there is a very real possibility that Jerika’s dream — walking with a walker — may very well come true. As her mother, Jen’s dream is that there will come a day that she can catch a cold or virus and she doesn’t have to worry that it could take her life. Jen’s heart breaks for the dozens of children and their families they have come to know over the years that have suffered the ultimate outcome of this disease. The time has come that we put an end to the pain and the tears and rejoice in what this treatment promises—LIFE!
Mike, Melissa, Ayva, and Lexx Howell – Alberta, Canada
Mike and Melissa have two beautiful children, Ayva, 4 years old and Lexx, 20 months old. Lexx was born January 25, 2008 perfectly healthy and happy. In April 2008, he was diagnosed with SMA Type 1. In May, the family took a road trip down to Salt Lake City, Utah to see Dr. Kathryn Swoboda, since Lexx’s doctors in Canada had little knowledge of SMA. In August, Lexx woke up with a cold, and by that night, he was in PICU for eight weeks. He was a fighter through that hospital stay as well as the next four times he has been hospitalized and Lexx continues to be a fighter every day. The Howells join Unite For The Cure to fight with Lexx in the hopes to end this awful disease.
Charlie, Sapna, and Maya Pringle – Texas
Charlie and Sapna Pringle welcomed their first child, Maya Nicole Pringle, on December 29, 2007. At six months of age, her parents and family began noticing that Maya was not bearing weight on her legs and was not pulling up. She learned how to sit independently so the doctors did not think anything of it at the time. Seven months of testing, countless doctor’s visits, and a “1000%” assurance from one neurologist that she did not have SMA, finally led the Pringle family to the Mayo Clinic. Maya was diagnosed with SMA Type II on January 14, 2009, two weeks after her first birthday. The devastation caused their family to think about all the things Maya would not be able to do anymore, but with the help of other SMA families and in particular, letters published on the Families of SMA website, their emotions changed from despair to hope. Hope that a cure was just around the corner. Now the family chooses to focus on all of Maya’s abilities rather than her disabilities and can thank several SMA families for their support. The Pringles keep their families and friends up-to-date on Maya through their blog: CharlieAndSapnaPringle.blogspot.com. When people meet Maya, they always comment about her beautiful blue eyes and how happy she is. Maya is funny, witty, and truly a blessing to the Pringle family. Charlie and Sapna have committed to “Unite For The Cure” because they know the cure is within reach and they want to support the doctors, scientists, and researchers of the SMA stem cell treatment program to make their one wish come true. They are also interested in helping raise awareness of SMA and encouraging SMA carrier testing.
Chris, Jennifer, and Hayden Calafiore — California
Hayden Christine Calafiore was born on June 4, 2008. The Calafiores had never felt more love and happiness in their lives until that day. Hayden was the perferct baby girl and passed all of her newborn screening tests. On October 17, 2008, at 4 months old, she was diagnosed with SMA Type 1. Since the Calafiores had never heard of SMA before, they were sure it was a very rare disease. After doing some reseach they learned that it is in fact a “common rare disease”. Determined not to let this happen to their daughter, the Calafiores reached out to the best doctors in the SMA field. They were told that there were drugs and compounds that may possibly slow the progression of the disease, but there was no cure. The Calafiores have always believed that a cure exists, but it just needed to be found. Through more research they learned of Dr. Keirsteads progress with stem cells at UC Irvine and they contacted California Stem Cell immediately. The Calafiores were told that Dr. Keirsteads program was awaiting approval by the FDA. One part of them was overjoyed to know there is something to stop this disease and the other part of them was frustrated and sad to know it was there but was not being used yet. So this is why the Calafiores have decided to Unite for the Cure. They can’t just sit here and wait; SMA is not waiting for them. They truly feel Dr. Keirstead and his team are on the path to curing SMA and all efforts should be made to move this research forward as quickly as possible.
Don, Chelsea, Joseph, and Micah Marshall — California
Micah Paul Marshall was born to Don and Chelsea Marshall on June 2, 2008 perfectly healthy in every way. Micah was diagnosed with SMA on December 9, 2008 at 6 months of age while recovering from a collapsed lung and pneumonia in the hospital. Since the Marshalls month long stay at the hospital – and almost losing him – they have been trying to make the most of every day with Micah and keep him as healthy as possible. He still smiles, laughs and gets mad when they aren’t paying attention to him. Micah squeals in delight at his 4 year old brother Joseph and in turn makes them all laugh. The Marshalls are stepping up to Unite for the Cure because they do not want even one more family to have to be told that their baby is sick and there is no cure. They also want their baby and all others to be able to run, jump, skip, and hop some day. Follow our story at MicahPaulMarshall.blogspot.com.
Erika, Steven, Riley, and Logan Ragland — California
Erika and Steven Ragland’s son, Logan, was diagnosed with SMA Type II in February 2008. Logan was 20 months old at diagnosis and for the first year of his life the Raglands believed Logan would run after his sister, ride a bike and climb trees. Their family had never heard of SMA and had no family history. They were devastated to hear their son would never walk and may die from a common cold due to weak respiratory muscles.
The Raglands will not wait for SMA to continue to steal away their son’s abilities while leaving his mind intact to take exact account of all his physical losses. They don’t know what the future holds, but they do know Logan, along with his sister, is the bright shining light of their lives. Their journey is different, at times painful and sad but meaningful and wonderful nonetheless, because Logan is a smart, funny and curious little boy who always keeps them laughing, inspired and in love with him and his precocious big sister, Riley.
The Raglands believe they owe it to Logan, Riley, and all children with SMA and their families to try their best to stop this disease. They know spreading awareness of SMA through political action, fundraising and now in partnering with Unite For The Cure will someday lead to an end to SMA. All of our children and families deserve it. With a cure or treatment – estimated by experts to be 5 years away with proper funding – the Raglands are honored to join in solidarity and in commitment to raise the funds needed to stop SMA once and for all. Let’s get to work!
Dakin, Devon, and Dakin Lovelace — Texas
Meet the Lovelaces—Dakin, Devon and Dakin (Big Dakin has been trying to saddle little Dakin with the awful nickname ‘Deuce’, but Devon is having none of it). The Lovelaces are thrilled to be joining up with Unite for the Cure! They feel truly fortunate to be part of such an amazing group of people!
Dakin and Devon tried for over a year to get pregnant. When they finally did, they were nervous but enthralled. As soon-to-be parents, they were of course concerned with the health of their child, and were relieved to hear over and over again how healthy the baby was. Dakin was born on Halloween 2007.
Three months later, Dakin couldn’t breathe anymore. Literally, one day he couldn’t breathe. Through a string of events that they can label with no other name than ‘miracles’, Dakin was stabilized and lifeflighted to Dallas, where he and Devon spent the next 2.5 months.
No one could come up with an explanation as to why this perfectly healthy child couldn’t breathe. Doctors bandied about theory after theory, but nothing really fit. They were discharged from the PICU with a tracheostomy and a ventilator and told “he’ll grow out of it”, something they desperately wanted to believe.
But something just wasn’t right. Devon spent evenings at the rehab hospital searching on the internet for some reason to what was going on. On Wikipedia, of all places, she found a disease called Spinal Muscular Atrophy with Respiratory Distress (SMARD). Praying that the SMA test that Dakin had been given would have ruled out SMARD, she contacted the geneticist, who informed her that a ‘regular’ SMA test would not have identified SMARD.
Dakin finally saw a neurologist who had the same theory as Devon. He was tested for SMARD and the result was positive. Dakin is one of maybe 60 people in the world with SMARD. The Lovelaces have only been able to contact 6 other families with affected children.
No one in the United States is researching a treatment or cure for SMARD. There has been successful stem cell work done in Italy on SMARD, and so that is why the Lovelaces are joining up with Unite for the Cure. They hope that Dr. Keirstead’s research can some day be applied to SMARD as well—this is the only hope they have for a treatment or cure for their son.
You can follow their journey on their blog at VentSuperman.blogspot.com.
The Lunt Family — California
Chad and Cherisse Lunt live in Menlo Park, CA with their three children: Dallin, Jocelyn, and Lucy. Dallin (5) and Jocey (3) are both perfectly healthy and strong while Lucy (10 months) was diagnosed with SMA Type I in March of 2009. The Lunt’s are keenly interested in the research to cure SMA and up to this point have felt like there was little they could do, directly, to help in this great cause. Helping raise awareness, while providing critical funding for this treatment, has brought increased hope and peace to this family.
Like many other families who are experiencing this illness, the Lunt’s had no family history of the illness and, after having two perfectly healthy children, took it for granted that they would have children born into their family without any complications. Although Lucy suffers from this disease, she doesn’t let it affect her disposition. She is constantly smiling and bringing happiness and hope to all who come in contact with her.
The Lunt’s are incredibly hopeful that creating additional awareness of SMA, as well as providing critical funding for this potential cure, will garner the support and funding needed to bring an end to this disease. Unite For The Cure is a critical tool for the Lunt’s as they strive to achieve their goal of increased awareness and funding focused on this specific disease.
Jennifer and Tim New — Georgia
Chance New was born on June 25, 2008 in Riverdale, Georgia. As most babies, he was the light of the New’s world. He was the 3rd of three children given to “hold” by GOD by Jennifer and Tim New. At 4-months-old the doctors noticed Chance was unable to roll over, hold his head up, even move his hands off the floor. Although his mental skills were exceeding, his motor skills lacked. This quickly led to physical therapy, feeding therapy, neurologists, and then ultimately geneticists. At 9-months-old, Chance was diagnosed with Spinal Muscular Atrophy Type I. Unsure of any treatment/cure, cause, and what could be done, the News sought help from doctors and mainly the Internet. During a visit to the geneticist they discovered that Chance had already made it past average life expectancy for children with SMA Type I and that there was absolutely nothing they could do. They would not accept that as the answer. They would not sit back and watch their youngest child be taken away! Well, GOD had other plans! Just two weeks after his diagnosis, while visiting with his grandparents, Chance woke up very lethargic and pale. After not eating and a breathing treatment, his symptoms became worse. Jennifer and Chance’s Grandpa rushed him to the emergency room, watching Chance take very little breaths, and he even stopped breathing for a minute in Jennifer’s arms. When they got to the emergency room the doctors and nurses took Chance in and immediately hooked him to a nasal canula and oxygen mask. Chance was then rushed to Children’s Healthcare of Atlanta where the News found an amazing team. Exactly one week after this incident, Chance went home to be with his Heavenly Father, April 17, 2009, at just 9-and-a-half-months-old. Jennifer and Tim have started a foundation in Georgia, Second Chance 4 SMA, in hopes of finding a cure for this disease. They want nothing more than to watch their children grow up and live healthy, “normal” lives. They feel that Unite For The Cure is a wonderful way to not only help funding for Type I research, but will also help bring much needed awareness of SMA. Jennifer and Tim are very pleased to be part of Unite For The Cure and are going to do all they can to make sure that their children and families living with SMA will soon be able to sleep at night knowing that they will not wake up with their child forever “asleep” in their arms!
TJ and Jaime Gooden — Tennessee
Most people fail to grasp exactly what occurs when you hear your child will likely die. It’s the little things that seem to hurt the most. You spend 9 months daydreaming about her life: how you will handle that first boyfriend she brings home or how she will look when she walks across the stage at her graduation. Once you realize your child will die early, there is an empty void left in the place your daydreams used to go. That’s the part that hurts the most. I already miss the future my daughter will never have.
Nora Madison Gooden was born January 23, 2009. At 6-months-old, Nora was diagnosed with SMA Type I. We started a website – GoodenTree.com – for Nora before she was even born. We began documenting everything starting from pregnancy so that one day we could show the entire story to Nora. It’s ironic that Nora may die before she has a chance to read any of it. Nora is an incredibly beautiful red-haired little girl who spends most of her day happy and smiling. It’s often too much to bear to see her so happy and think “how many days does Nora have left?”. Today, minimal movement in her arms is the only thing keeping her from being completely paralyzed. Her nursery, once beautifully decorated, now looks more like a hospital room packed with medical equipment and devices.
Unite For The Cure is the single best opportunity SMA children will have in their lifetime. This is your chance to do something to help Nora and all the other devastated parents of SMA children. We are joining Unite For The Cure along with our family and friends to give our daughter and possibly your next son or daughter a chance for a future.
Steve, Rozie, Kiley and Quinn McClay — Washington
The McClay’s seven year old daughter, Kiley, was diagnosed with SMA Type II at 16-months-old. First and foremost, they see Kiley as a beautiful, smart, funny and kind little girl who just started the second grade. Secondly, the McClays know the heartbreak she has endured not ever having stood or crawled and the knowledge she has of being different from most of her peers. They want to join this fight because no one should ever have to hear their 3-year-old child cry because her mom and dad have not “taught” her how to walk.
The McClays have been active in Families of SMA, fundraising and spreading the word about the devastation of SMA for the last six years. They have heard Dr. Keirstead speak at several FSMA conferences and it has given them much hope, not only for themselves, but for all the families that are suffering. They do not want the clinical trials to be postponed or prolonged one day longer because of lack of funding.
They thank everyone who is already involved and encourage those who aren’t to help in any way they can. “If we all work together we can truly make a difference in the progress to cure SMA.”
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” — Margaret Mead
Dave, Kellie, and Zachary Span — California
Zachary Louis Span was born on April 18th, 2009. Parents Kellie and Dave were overjoyed at the birth of their son and had many great things planned for their family’s life. After a short time, they became concerned with his lack of muscle tone and movement of his legs. At his 2 month appointment Zachary’s pediatrician was also concerned, but more so about his tummy breathing, and he was admitted to the hospital. Within a couple of days a preliminary diagnosis of SMA Type I devastated the family (the diagnosis was later confirmed through a genetic test). Determined to make the most of his potentially limited time, the Span family packed up their SUV, took leaves of absences from work, and set out on a journey across the country less than a week after the preliminary diagnosis. Their journey is chronicled as “Zachary’s Great Adventure” on their website – TheSpanFamily.com. Their journey took them over 9,000 miles in 22 states over six weeks. Did we mention they took their dog Lucy as well?
Currently, Zachary is happy and healthy as the Spans plan out his next adventure – see their website for recent updates. The Spans are excited about Dr. Kierstead’s research and believe that it will lead to a cure for SMA.
The Felix Family — Arizona
Mike, Jaci, Amber (15), Jacob (3), and Alexa (22-months-old with SMA Type I) — Alexa came into this world on November 16th, 2007. A beautiful perfect baby girl. But from day one, Alexa has been fighting for her life. Not even 24-hours-old, she was taken to the NICU with severe jaundice and anemia. Doctors told Mike and Jaci Felix three days later that her organs were shutting down. No matter what they did, her bilirubin would not come down, and her anemia kept getting worse. They gave permission for her to have a total body blood exchange, a very risky procedure. The procedure was scheduled for the morning and they just prayed. The thought of losing their daughter was overwhelming. The prayers must have worked because one last blood check showed that her numbers were finally getting better. After several blood transfusions and lots of medicine, Alexa was finally ready to go home. The Felix’ thanked God for being so blessed.
Then just shy of turning 6-months-old, the Felix’ were told their daughter had SMA Type I, and the NICU stay at the beginning of her life was nothing compared to the fight she was facing now. They almost lost her once, and they are determined not to let that happen again! Since Alexa’s diagnosis, she has been hospitalized numerous times. The Felix’ feel so strongly that this stem cell program could one day help her, and so many others. Their daughter has had many obstacles in her life and she keeps overcoming them. She keeps showing them what a fighter she is, that she wants to be here. The Felix Family is going to fight right along side her. That is why it is so important to them to raise money for this wonderful cause.
Whit, Lindsey, and Jonas Coleman — Utah
Whit and Lindsey Coleman are thrilled to be the parents of Jonas Mathie Coleman. Jonas joined their family perfectly healthy on December 2, 2007. Whit and Lindsey were so excited to start the adventure of raising their first baby boy. Six weeks later, they were heartbroken to learn that Jonas was diagnosed with SMA Type I. They had never heard of this horrible disease and neither of their families have any history of SMA. Coming to terms with their new life and changing their expectations of what they wanted was difficult. However, Jonas wasn’t going to give up and so they couldn’t either. Since then, the Colemans decided not to let this disease run their lives but would do all they could to give Jonas every opportunity to have a full and fun life. Jonas is now 22-months-old and each day they have with him is a gift. Due to the progressive nature of SMA, they know that their time with him is limited. Unite for the cure gives them the hope that they will have a lifetime with him and the security that they can have a healthy family in the future.
You can follow Jonas’ adventures on their blog at Coleman2Family.blogspot.com.
The Zahn Family — Wisconsin
Our daughter Lucy was born July 9, 2009. She was developing normally, it seemed, until 4 weeks, when she stopped lifting her head. Everyone reassured us that all babies developed at their own pace, so we tried to push our concerns to the back of our minds. Lucy was never a big leg mover, either, but we thought she’d catch up. At her 2 month check-up, her pediatrician was immediately concerned with the lack of muscles in her legs and neck. She made us an appointment to go to the Children’s Hospital in Milwaukee, and we went down there right away that night. We were there for 3 days while they drew vial after vial of blood, took urine samples, did x-rays and an MRI. Then they told us it would be 6 weeks for results and sent us home to wait. Four weeks later, on October 14, we met with the geneticist, who told us it was what she had suspected, SMA Type I, and that our beautiful baby would most likely not live to see her second birthday. The genetics counselor, bless her, gave us info on FSMA and a clinical trial in Madison. We found strong, faithful people fighting for their children, and learned about all the hope there was for treatment and a cure. We knew that we were in the right place, and that we wouldn’t take Lucy’s diagnosis without fighting alongside these inspiring people. There IS hope for our children; a cure CAN be reached in their lifetime! LucysHopeForACure.homestead.com