Monday, May 23, 2011

Help Hayden. Give Hope.

26.2 Miles
5 Boroughs
1 Very Special Kid 
Dear Family and Friends,
As you know, my son Hayden was born with Spina Bifida.  You may have read much about him on our blog at
Because of Hayden, it is my honor along with my awesome sister, Melyssa Oster, to be among the 10 invited to run on behalf of the Spina Bifida Association (SBA) as their 2nd Annual New York City Marathon charity partner.  If you don’t know what Spina Bifida is, it is the most frequently occurring permanently disabling birth defect.  Every day about eight babies born in the United States have Spina Bifida or a similar birth defect of the brain and spine.

The first year that Hayden was born he underwent 7 surgeries (brain shunt, spine closure, hernia repairs and eye surgeries).  He continues to be a champion in the way of working with as many as 6 therapists per week.  We feel blessed that all his surgeries have proven successful and that he has needed no more and we hope to keep it that way.
Approximately 166,000 people in the United States are living with the challenges of Spina Bifida. Find out more information on this challenging and complex birth defect by visiting
SBA is the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those who are touched by this challenging birth defect.  
Now I would like you to join the cause. I will be running the New York City Marathon on November 6, 2011 in honor of Hayden and to benefit SBA.  
Please help make this a memorable run and support an organization that will support my family for a lifetime.  
Would you please consider making a donation of $1 per mile ($26), $2 per mile ($52), $5 per mile ($130), $10 per mile ($260), $20 per mile ($520)?  
Thank you so very much.  I do hope you’ll support this very worthwhile organization.  Please make and on-line donation by clicking the link to  donate now.  
You may read below to know where this money will be put into use.
With much gratitude,
Adrienne Trigg
Where Does The Money Go?
  • $52.40 will provide 10 diagnosed mothers-to-be and six families living with Spina Bifida with tools, resources, information, and guidance from our National Resource Center for one day.
  • $78.60 will provide a full-day of education and supportive services to a family of three living below the poverty line.  This includes treatment information, access to health-care facilities, and psycho-social programming assistance, among others.  A meal is also included.
  • A $131 contribution provides 550 women with information about preventing Spina Bifida with daily folic acid.
  • $183.40 will support at least two children attending the three-day Kids!Camp – the only such camp in the country that promotes self-confidence, esteem and independence all in a fun atmosphere.
  • $262.20 enhances our college scholarship fund to further a young person with Spina Bifida’s education.
  • $1,000 furthers research in Spina Bifida to develop better treatment for, more understanding about, and new ways to prevent this life threatening birth defect.

A Mother's Story of the Spina Bifida diagnosis

I have been fortunate to count many experiences as blessings in my life.  The one that I am going to share with you is my sacred blessing of raising my son, Hayden, with Spina Bifida.  My story begins many years ago prayerfully struggling to become a mother.  I tried various fertility treatments and adoption when I miraculously became pregnant with a little girl five long years later.  After giving birth it felt like I was seeing the world in a way I never had before.  She was all I had wanted for so long, I couldn’t wait to immediately start trying to have another.  After a year passed and I was unable to became pregnant, I underwent invetro fertilization (IVF) and was overjoyed when I became pregnant with twins. I felt God’s love for me in this process and knew that I had made the right decision.  It was this prayerful confirmation of my decision that helped me to carry on with some of the hardest trials I have ever had to endure.
Early on in the pregnancy, I miscarried one of the twins known as, Vanishing Twin Syndrome.  I mourned this loss and felt love and comfort from many close family and friends who had also lost pregnancies.  It was reassuring to know that I was not alone in my grief.  Shortly thereafter, at my 20 week ultrasound I had been sent to a Perinatologist for an in-depth ultrasound.  I had been to her for my first pregnancy, so I felt that I had nothing to fear.  What happened in that office that day turned my life upside down.  My husband and I were told that our child had brain and spine abnormalities and was diagnosed with Spina Bifida.  
The doctor said that we could abort the pregnancy, do an experimental inutero surgery study, or wait and see.  When we came home from the doctor that day full of grief, we began to pray.  The Lord testified to me that day that we were not alone and that he was mindful of our hearts.  Minutes later, our friend unexpectedly paid us a visit.  He felt prompted to stop by and see how we were.  We will never forget that moment.
That day, I began researching as much as I could about this condition.  Our church ward held a fast for our family so that we could participate in the experimental study.  We were selected to participate in the study, but after three days of many test, we received yet more news.  Hayden’s brain had what appeared to be another abnormality that excluded us from the inutero surgery.  Again, without a doubt, we knew that it was the Lord’s will.
When we returned home, I continued to pray and rely on the Lord to guide me.  I read in  our gospel literature that when someone has an ailment or an illness and they are healed as the result of a blessing, their faith is being strengthened.  But for those who aren’t healed but continue faithful, their faith is being perfected.  The first is a faith-promoting experience.  The second is faith-perfecting.
As I reflect upon the past 2 years of work with my happy Hayden, my faith is strengthened from the many things that he has been blessed to overcome.  Seven surgeries within the first year of his life and crawling at 22 months.  While we continue to attend sometimes 6+ therapies per week, my hope is that my faith is perfecting.
Details of our families past two years can be read at