What is Shawn's Ironman and what is Shawn's Anomaly? Why is there a difference?
Inspired by his son's medical battle with congenital anomalies, Shawn's Ironman is Matthew's personal blog about the Murphy Family's story, and Matthew's journey to complete what he has always considered impossible - an Ironman Triathlon. Matthew not only wanted to become an Ironman for his own sake, but he wanted to prove to his son that anything is possible. Matthew's journey is to become his son's Ironman.
The Matthew's story gained popularity and people began to ask the Murphy family how they could help. Matthew contacted Texas Children's Hospital to start a fundraising effort to help other families through the ordeal of dealing with congenital anomalies like Shawn's. He found out Shawn's case was not a common condition and no research or fund had been set up for these congenital anomalies. He then asked if one could
be started. Shawn's Anomaly was formed in June of 2011.
About the Murphy FamilyWhy did the Murphy Family get involved with this?
See the Murphy's Video Story Here!
Why did Matthew choose an Ironman?
From the time Matthew was a child, he was inspired by the Ironman Championship television coverage. Because he was not a competitive swimmer, biker, or runner, he never dreamed he could accomplish something of that magnitude. After watching his young son endure three heart-wrenching surgeries before he was 14 months old, Matthew realized that "nothing is impossible". To prove to himself that no goal is unattainable, Matthew decided to attempt the most impossible thing he could imagine- the IRONMAN.
What is Matthew's training regimen?
Depending on the week, Matthew spends between 15 to 30 hours swimming, biking, running, and weight training. He is employed full time, attends school part-time, and schedules his training so he has time with his very supportive family. Preparing for an Ironman is a family affair and the family must be on board for the journey to be successful.
Does Matthew have a coach or trainer?
Yes. Matthew worke with Coach Dana Lyons of Finish Strong Coaching from March of 2011 to May 2013. When Matthew stepped up the challenge, he turned to his good friend and triathlon coach, Aaron Palaian, to get him ready for the 2013 season.
What exactly were/are Shawn's conditions?
Multicystic Dysplastic Kidney
Patent Urachus
Tethered Spine
Y-Type Urethral Duplication
Inperforate Anus
How is Shawn's current condition?
Shawn is doing very well. Apart from some minor scars on his back, an asterisks shaped scare where his bellybutton should be, and only one functioning kidney, Shawn is like any child his age. Because the surgery was so close to important muscles that control the bladder there was concern about potty training, but everything seems to be functioning the way that it should.
Shawn may never be able to attempt an Ironman event like his father because of the strain that it may cause on his only functioning kidney, but that will not be know for many years. After all, nothing is impossible, right?
How can I follow Shawn's Progress?
When a milestone, doctors appointment, etc. in Shawn's life or medical journey arises, Matthew will post about the event on the SIM blog. To see an example, CLICK HERE!
Any other stories of kids like Shawn?
Approximately only 200 cases have ever been recorded of Shawn's rare congenital anomaly, but other congenital anomalies affect 1 in 30 children and is the leading cause of infant deaths. In nearly every case's summary there is a very similar and sobering conclusion as summed up from this Case Report:
"Although a number of theories have been proposed to describe the embryology of the condition, the actual mechanism of the disorder is still unclear."
The more time and money that can be raised for research and awareness will help find other cases and care of other children affected by congenital anomalies.
About Shawn's Anomaly
What is the mission for Shawn's Anomaly?
To provide education, hope, and help to families with children born with congenital anomalies. Shawn's Anomaly accomplishes this mission with the following goals:
1. Standardize Diagnosis & Treatment of Condition2. Determine Cause of Conditions/Anomalies
3. Educate and Assist Families with Children Affected by Birth Anomalies
4. Organize and Centralize All Information of Findings and Studies For Reference
Why should I support this cause?
Every cause has a list of generous donors who are passionate believers in the work, but Shawn's Anomaly is the only organization dedicated to helping families affected by congenital anomalies. If the mission of Shawn's Anomaly and Matthew's journey has touched or inspired you,, please donate so research and awareness can continue to help families all over the world.
How much money does the Murphy family receive from my donation?
NONE! Though the Murphy family did accumulate medical debts as a result of Shawn's three surgeries, they have good insurance and were able to establish payment plans to help reduce the cost. They are bless by a great community that has supported them through everything. All money received from donations goes straight to achieving the mission of Shawn's Anomaly.
How can I donate?
There are several ways to donate to Shawn's Anomaly:
- The most rewarding way to donate is to support an athlete that has dedicated an event through the Reason2Race program. Their names can be found based on what event they have dedicated to raise money for Shawn's Anomaly and you donate directly to their journey.
- A direct donation can be made to the research fund that has been set up at Texas Children's Hospital by clicking HERE
- A direct donation can be made at a fundraising event or at the Shawn's Anomaly tend during a race.
- You can also fund the Shawn's Ironman #SIM365USA Journey of Hope & Awareness by clicking HERE
All donations go directly to the mission of promoting awareness of congenital anomalies, funding research projects that help find cures or preventive measure, and helping families while their child is being treated. The first research fund is for $25,000 raised through Shawn's Anomaly will be directed specifically to the medical research fund established at Texas Children's Hospital.
Are there any paid staff for Shawn's Anomaly?
No. Every effort to carry out this mission, including this website, has been accomplished by our volunteers. If you would like to volunteer, we could really use your help.
Anomaly?
Our main way of raising the money for Shawn's Anomaly are through those athletes that have chose to make Shawn's Anomaly their Reason2Race. We also have fundraising parties, sell t-shirts, stickers, etc. Our truest, lasting success will come from direct and ongoing donations from caring people who are passionate about the cause.
Can I get a tax deduction for my donation?
Yes. 100% of direct donations that go to Texas Children's Hospital can be used when filing taxes. Here is the information for direct donation:
Texas Children's Hospital | Attn: Shawn's Anomaly Fundraiser
1919 S. Braeswood, Suite 5214 Houston, TX 77030
Tax ID 74-1100555
What makes this cause unique as opposed to other causes out there to donate time/energy/money?
We realize the airwaves, the Internet, and your mailbox are full of opportunities to donate. Shawn's Anomaly is the only one of its kind. Donations and volunteer efforts will greatly impact families with children with congenital birth anomalies. The more awareness we can spread about Shawn's Anomaly, the more families we can help.
What kind of research will be funded?
Though the research procedures have not been finalized, the focus will be collecting all the case studies ever recorded regarding these congenital anomalies, determining a proper procedure for treatment and diagnosis, and determining the cause of the congenital anomalies. Extensive research is needed, so the process will take money and time.
What do I get for my donation?
All donations are tax deductible through Shawn's Anomaly Fundraiser at Texas Children's Hospital and you will receive a receipt for all donations you make. You will also get the satisfaction of knowing that you helped us reach our mission of education, hope, and help for every family.
If Shawn's Anomaly is a non-profit, why do you have sponsors? Do your sponsors donate anything to research?
In 2011 before Shawn's Anomaly was formed, sponsors helped equip Matthew with products or discounts so he could get the gear he needed to complete his journey. Some of the sponsors stayed on board and others were added in 2012 when other athletes decided to join the fundraising efforts with Matthew. The sponsors help athletes that have made Shawn's Anomaly their Reason2Race reduce the cost they would spend on equipment, training & events . Sponsors can, however, donate to the research if they feel led to do so beyond responsibilities of being a team partner.
Team Shawn's AnomalyCan I join Team Shawn's Anomaly?
Yes, of course you can join! Check out Reason2Race and follow the three easy steps. We would love to have you on the team.
What are the advantages to being on Team Shawn's Anomaly?
Find out about the team incentive program by CLICKING HERE!
How many people are on the team?
The team is growing quickly because of the Reason2Race program athletes of all ages choose to be a part of the team. In 2011 there were 2 members, but in 2012, the team grew to 12 members. All of the team members choose one race a year to dedicate to fundraising for Shawn's Anomaly instead of doing several races that stretch thin their support from friends and family that follow and donate to their journey to Shawn's Anomaly.
Can I be a part of Shawn's Ironman Team?
Shawn's Ironman represents Matthew and his journey to be his son's Ironman, but it is not a team, however, Matthew is a part of Team Shawn's Anomaly. You can become an Ironman for another child that suffers from conditions like Shawn by dedicating your race to raise money for the Shawn's Anomaly mission. To sign up go to Reason2Race.
Do I have to be a triathlete? What other events can I be involved in to collect donations?
NO! Athletes of all skill levels and focuses are a part of the team. You can run a local 5K, a marathon, participate in an open water swim, a century bike ride, etc. In reality the ways to help and raise money are limitless. You tell us how you want to help raise money and we will do everything we can to support you.
Do I have to be in Houston to be on the team?
No. Because the congenital anomalies affect children all over the world, we encourage athletes and volunteers everywhere to help raise money for the research. If there is an event near you that you want to participate in to raise money for Shawn's Anomaly, we encourage you to sign up for the event then sign up for your fundraising page on the Reason2Race website. You would introduced to the team that give you support and accountability as you are going through your journey.
Do you still have questions? Write us! We will be glad to answer them.
