Slideshow and Video

Ashton's slideshow and video produced by Chermaine Wulff for the Benefit Concert are now on Youtube.  Click on the link on the right of his blog to view the videos.  Thanks!

Ashton's Benefit Concert - June 1st, 2013

Amy Guess with Ashton

Have you ever had something so amazing prepared for you and have no idea how to repay or fully thank those involved with that precious gift?  I am humbled.  It’s been an amazing journey.  Looking back on Ashton’s life thus far; his birth on September 18^th last year, his health struggles, the mystery of his symptoms, and his diagnosis in March of this year, it was a time full of happiness and emotions.  After his diagnosis, we immediately discovered the Smith-Lemli-Opitz Foundation and learned of our opportunity to attend the SLO conference in June.  Initially, Neal and I were in disagreement whether or not to attend the SLO conference.  After I attended the temple, my fears and concerns were put at peace and my prayers changed from “Should we go to the conference?” to “How do we financially make it to the conference?”  The next day I received a text about a birthday party down the street.  Although I felt run down, we decided to go.  Our friend, Christa Bingham, was there and I spoke to her about my idea to sell paintings to earn money.  She listened and replied, “I have a different idea.”  Christa explained how her sister, Amy Guess, was coming from Las Vegas in May and possibly could do a benefit concert for Ashton.  As the week went by, my fears and pride persisted, Ashton's Physical Therapist and my Aunt urged me to allow others to help.  My Aunt Jo has an amazing daughter with special needs and she said, “suck it up Tania” we laughed and discussed how it is also a lesson from the Lord to learn to be a gracious receiver. 

The next step was finding a place to have the concert.  After numerous phone calls, I was still not settled as to where we would hold this event.  I prayed and asked the Lord where we should have the concert.  In the morning, I visualized the Anderson’s barn in my mind and I learned that Neal had thought about Anderson’s barn the previous night.  As I went to Women’s Conference, I ran into an old friend and shared Ashton’s story.  I invited her to Ashton’s Benefit concert and we both laughed when she found out I didn’t know when or where it would be, I just had faith it would happen.  She said, “What about the Anderson’s barn?”  I called the Anderson’s and she was happy to hold it at her barn.  She explained that when they bought the barn they dedicated their land to the Lord to hold various events.  It just took off from there with so many awesome people volunteering their time and talents to help with Ashton’s cause.  Christa did a beautiful job organizing the advertising and entertainment.  Shawna Zitzelsberger was happy to help with the auction and Monique Surprenant was excited to help with the bake sale.  Daisy Larson wanted to help with the concession and Chermaine Wulff volunteered to make the slide show and video.  Other friends continued to step up and help.  Corey Mason, Nikki Facer, Sheridan Ringhiser, Mike Biggs, Mark Winters, Sean Hansen, Vaughn Tanner, Josie Newbold, and many more.

Prior to the event, we had an opportunity to get to know Amy a lot better.  Christa Bingham is a humble, loving friend and brought her family and sister over for dinner.  I felt blessed to get to know Amy and will be forever grateful for her talent and willingness to share it!

The benefit concert was Beautiful.  The decorations reminded me of a wedding, the bake sale was flawless.  The live and silent auctions were filled with awesome donations.  I felt the love of the Lord that night and I still get tingles when I think of the journey and how the Lord’s hand was such a vital part in it!  Ashton has a special spirit and touches lives.  

The night revealed talents of many people.  We started with a slideshow and video presentation created by Chermaine.  We decided it would be better for Chermaine to interview us on video for 2 reasons:  I get easily choked up and Neal talks a lot!  J  However, when the video started playing, the background music was overtaking our recorded voices.  So, Neal and I decided to stop the video and talk to the group and tell Ashton’s story.  The video is posted on the blog and Facebook page and is a must see!  As we were speaking, I looked into the faces of all those in attendance and felt a lot of love and joy in their smiling faces.  Everyone was having a great time and so much fun.

It was special to talk to Amy and Christa before they sang.  They are great.  Chris Bingham, Brent Phelps, Emily Phelps, Josh Horne, and Christa Bingham accompanied Amy Guess.  Rachael Alldredge opened up the event with a few wonderful songs.  Corey and Lisa Mason worked on the sound board.  The concert was amazing and choices of songs were beautiful! 

Christa Bingham and Amy Guess

Chris Bingham

Josh Horne

Rachael Alldredge

Brent Phelps

Emily Phelps

Corey and Lisa Mason

The live auction was a hoot to watch as cinnamon buns were selling for $10 a piece, among other fun bids.  I felt the generosity of everyone there and those that donated items for the auctions.  

Ashton’s Opa, Gerard Blommaert, an artist from Edmonton, provided some drawings for the silent auction.  One of the prints was of some classic cars in front of an old barn.  We were shocked to learn that this print did not sell.  It wasn’t until the following day that we learned why.  To show appreciation to the Anderson’s, we donated that drawing to their family and thought it fit really well into the theme of the location.  The Anderson’s are amazing people and we are eternally grateful for their hospitality.

Barn Drawing is in the middle.

I was excited to see Ashton’s therapist Kelly in attendance as she has helped Ashton so much.  I also was happy to see one of Ashton’s dietitians there, Karen Schmidt who said, “Honestly, I didn’t know what to expect driving up to a barn, but there was so much LOVE in that barn!!!”  So many played a part that evening and we thank everyone involved – from those who planned it to those who participated in the evening!

When I think about this great blessing, I am reminded of the scripture, “Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you: For every one that asketh receiveth; and he that seeketh findeth; and to him that knocketh it shall be opened.”  ~Matthew 7:7-8

I see Ashton as a great blessing in our lives.  He brings us much joy and has given us many opportunities to open doors that would not have been there if he wasn’t a part of our lives.  He spiritually teaches me more and more each day.

In closing, I came across a scripture that has given me a lot of strength.  The Lord is speaking to Nephi, “And I will also be your light in the wilderness; and I will prepare the way before you, if it so be that ye shall keep my commandments; wherefore, inasmuch as ye shall keep my commandments ye shall be led towards the promised land; and ye shall know that it is by me that ye are led.”  1 Nephi 17:13

The evening far exceeded our expectations and we’ll be forever grateful to all those who organized this wonderful event!  Thank you dearly for your service and going extremely above and beyond to make the night perfect!

I feel honored to be Ashton’s Mom and I thank everyone for supporting and loving him!

The beginning of Ashton's Journey...

In 2011, Neal and I had a "complete" family with three wonderful children, but felt strongly there was one more to add to our clan.  So began our journey.  When our kids learned that Mommy had a baby in her tummy, they named her Breanne and especially Hailey was planning on a sister. When I was three months pregnant, Neal was out of town for business and I had a dream. In my dream, I was three months pregnant and outside watching the kids play when all of a sudden my baby was out of my belly running around. Only he was a toddler with heavy lids on his eyes, a lot of red long hair that blew in the wind, many freckles, and seemed to run on his tip toes. He was clumsy, yet happy and playful.  He was long and skinny with floppy arms.  I was mortified thinking, this baby should still be inside.  The neighbors are going to ask and how do I explain? A woman stood next to me saying, “You have to accept this and come to terms with this and be at peace.”  I woke and called my husband and said, “We are having a BOY!!”  Sure enough our sweet baby boy Ashton was born September 18, 2012, weighing 8 pounds – 1 ounce and 19 inches tall.

Our delivery was very quick, and at first Ashton struggled to breath.  Within a few minutes he was crying and well.  Neal and the nurses quickly discovered unique features of Ashton.  He had adorable webbed toes and had hypospadias. As the night came, Neal and I noticed his eyes were often shut and when he was awake one eye would open just a peak.  When Ashton nursed, he seemed to pacify and didn’t seem to eat enough.  He dropped down from his birth weight and remained at 7 lbs - 13 ounces for the first month of his life.  We decided that due to his weight loss and his eyes still appearing shut, it was time to see a specialist.  To our surprise, the Pediatrician referred us to a Neurologist. 

The Neurologist diagnosed him with low muscle tone and a muscle in his neck was under developed causing him to favor his right side.  Ashton had an EEG to rule out seizures and epilepsy. We were referred to other specialists including a Urologist, Ophthalmologist, Geneticist, and Physical Therapist. The Urologist plans to perform a hypospadias surgical repair in two stages.  The Ophthalmologist diagnosed him with Ptosis (droopy eye) and Amblyopia (lazy eye) and plans on surgical repairs. Ashton has a Physical Therapist work with him once a week.  He was starting to slowly gain weight, however he became very constipated, so we took him to a Gastroenterologist.  The Dietician developed a feeding plan to help Ashton grow and take care of his constipation.  Fortunately, we were able put weight on him.  During this time, we also took him to a Geneticist.  He performed a blood test and Ashton was diagnosed with a rare medical condition called Smith-Lemli-Opitz Syndrome.  To our surprise it was this test that gave the puzzle piece to solve his health mystery.  We discovered it is so rare, that there are only approximately 500 documented cases in the United States.  Nonetheless, I was so excited to have an answer that I quickly posted to all my friends and family.  I was happy to at least know what condition Ashton had, so we could care for him the best we can.  I had already had emotions when Ashton and I would be up all night due to his constipation pain and me feeling responsible when he didn’t weigh enough or struggled health wise.  Neal on the other hand had difficulty with the reality of learning about the Syndrome.

What did this mean for Ashton? His future, our future?  Together Neal and I have had to rely on our team of doctors and each other.  He is now seven months old and much stronger and healthier.  Although we had a good plan in place for him prior to receiving his diagnosis, we continue to learn more tools to help him progress.  Physical Therapy has already helped him so much.  We have discovered support groups and Foundations that cater to SLO Syndrome.  In June, the Smith-Lemli-Opitz Foundation is having a Family and Scientific Conference in Pittsburgh and we are looking forward to attend to meet other great families and learn more about the syndrome.

I feel so blessed to have this Beautiful boy in my life.  I may appear to be a stress ball who never sits down.  However, Ashton is a true blessing to our family and friends.  His huge smile melts hearts!  His cuddling nature is so sweet.  He is so calm and sweet, especially considering the numerous tests and appointments he has. He is loved and adored by his siblings and a joy to us! 

Love, Tania Grumbles

Ashton’s SLOS symptoms:

• Mild Global Delays (cognitively/physically)
• Poor suck/nursing issues
• Ptosis (Droopy Eyes)
• Amblyopia (Lazy Eye)
• Hypospadias (Penal Deformity)
• Syndactly in the 2^nd and 3^rd Toes (Webbed Toes)
• Hypotonia (Low Muscle Tone)
• Acid Reflux
• Sun Sensitivity