Paying it Forward: Session 5 Round 1

We have been BUSY since February. We have helped 15 families thus far this year. Our funds were raised from blacklight gauntlets at every location, burpee challenges, the golf outing, DBBB merchandise sales, the and the Irish Fest 5k!! I would sincerely like to thank each and every

one of you who participated in these events or donated to our cause. You each hold a very special place in my heart. DBBB wouldn't exist without all of you. I am beyond excited to see how we finish the rest of the year.

I am going to post backgrounds about the families we have helped in rounds since we have helped so many. Some families have chosen to keep their story private. Please continue to pray for all of these families!

Jace PatRick Smith

Our 13 year old son Jace PatRick was flown to Mayo in the early morning hours of Feb. 19, 2016. While there he was placed in a medically induced coma to control his seizure. This was the first known seizure that he had. In the past we had visited with many doctors about various things but had always been told he was a healthy boy. I am sure it was the mother in me that wasn't satisfied with that answer. Finally a doctor at Iowa City diagnosed Jace with dystonia at the age of 10. The doctor also said he had seizure like activity. So we then made an appointment with Mayo to get more answers. The doctor at Mayo agreed with the dystonia but wanted to remove seizures from his records. Knowing what we know now we believe Jace was experiencing seizures the whole time.

So back to the hospital...one morning while we were at the hospital we ran into Patrick Smith and found out Jamie was also admitted to the hospital. After we chatted with both Jamie and Patrick both Chris and I talked about their strength and kindness. I remember Jamie being more worried and concerned for Jace as she was of herself. Not long after we received a check in the mail from the Do better. Be better. Foundation. We were very thankful as we knew we had a long unknown road ahead of us. We knew Jace was strong but we weren't sure what we were dealing with at the time. We knew we would have many times that our faith in God would be tested. The strength and support of our family and friends helped us keep faith. We were very hopeful for Jace's recover.

After many days and tests we found out Jace was born with a mitochondrial mutation. (This is what Jace was studying in 7th grade science). Now things were starting to make sense. Looking back he had experienced other things that even the doctors were unable to diagnose. And it all was accumulating. His body did not have the energy to handle everything that was happening. The combination of the mutation, puberty, and his seizure(s) was too much to recover from. On April 24, 2016 Jace passed away in Chris', Macy's (our daughter) and my arms surrounded by family. We have found out since Jace is one of 5 kids with this mutation. We knew he was always special! And looking at the other children we were lucky to have Jace with us for as long as we did. Three of the others with the mutation died under the age of 3. There is one living 7 year old with other severe disabilities. The doctors that performed his genetic test said that even if they would have discovered the mutation earlier they wouldn't have had any knowledge on what treatment would have worked.

This was God's plan. The plan isn't the plan We even imagined for our family but we know it could have been worse. Jace didn't suffer. Jace had a good life. It has been hard to live with our new normal but we look back at Jace's life and he was such a good example of how we are supposed to live life. Every day he was excited for life. Even the little things. He didn't complain about anything (except for some of the meals I cooked!). He cared for others more than himself. He gave everything he had to whatever he was doing. And he gave everything and never expected anything in return.

There have been so many things that have happened during this journey that has strengthened our faith and our trust in God. Two stories that I will share that makes it hard not to believe. 1. On Wednesday night before Jace went to the ER he had a dream that he was in the hospital having a lot of surgeries. Jace was a very anxious kid that did not like going to the doctors. And when we went into the ER room on Thursday he was scared. They released us because they thought he was just nervous and needed to sleep. But when Chris took him back on early Friday morning he was so calm. I asked him how he was and he gave me a thumbs up and smiled. I know he hated when I worried about him but I believe God was there to comfort and guide him. (This was the last time I spoke to him alive.). 2. The last night in the hospital before we took him off the support I told him to let me know he got to heaven safely. We got home and I sat in my driveway and there was one star in the sky right over our house that was twinkling. I had to grab Chris and Macy to confirm that it wasn't anything other than a star.

We believe that when our time on earth is over we will be reunited with Jace once again. Until then God has given us family and friends (old and new) that will help us get through the days.

We miss Jace's zest for life and the small joys that made life fun, his compassion, his caring heart, his non-stop energy. Jace had a smile that made everyone around him smile. And when you met him he left an imprint.

We are doing our best to learn more about mitochondrial mutations and diseases. And one day we hope to help another family.

Chris, Natalie and Macy Smith

Carter Bixby

On May 9, 2016 my son Carter was rear ended while driving a tractor. He was ejected from the tractor and landed in the ditch. The tractor continued to drive around him twice missing him by 15 feet both times. The ambulance rushed him to Allen Hospital where they examined him and became very concerned about a brain bleed and possible chance of losing his eye so they decided that he should be transferred to Mayo in Rochester. We arrived at Mayo and spent a week in the ICU. Carter ended up with 9 broken ribs, multiple facial fractures, a broken clavicle and scapula, a collapsed lung, a cut by his eye and a small brain bleed. We where then moved out of icu to another room for about another week. We got home back to Dike on May 20 and what a miracle we experienced. Carter's eyesight is back to 20/20, his brain bleed is gone and his lung looks great.

Beckett Smith

My son Beckett (now 8 ) was born April 15, 2008 at 31 weeks at Mercy-Des Moines due to Placenta Previa. In spite of his prematurity, we only spent 3 weeks in the NICU and were told he looked amazing! He was 5 lbs when we got home and simply considered to be a "feeder grower". We were home in Early May of that year and carried on life with our new baby! His first few months were a little rough in the fact that he very VERY seldom slept, didn't eat and cried non stop. I begged to have a CT scan or something done and in mid July--the local CT scan came back and the dr said that Beckett was "missing part of his brain" and we were referred to a Neuro in DM with an appt date in mid OCT. I called Mayo on my own and got an appt up there for the same week that we were told the initial CT scan results. Mayos CT scan revealed that he was NOT "missing part of his brain", but that he had a thin Corpus Callosum. (This is actually seen in males often and is simply why they can't "think with both sides of their brains at the sane time"). We were told not to worry. Beckett was failing to thrive (still weigh 8 lbs 11oz) at 5 months, sleeping only an hour in a 24 hr period, and crying non stop. In Oct 2008, Beckett had his first seizure. The next day he had another. We were sent to Mayo where we started cares. In the beginning of Dec, he had his g-tube placed and we spent his first Christmas in the hospital. Over the next 2 years, we had many MRIs, biopsies, surgeries and hospital stays to try and determine what was going on with our sweet guy. We saw every branch of specialty imaginable. Eventually, repeat MRIs revealed that the white matter in his brain wasn't developing normally. I sent his medical records all over the country and harassed Drs until they would speak to me-simply in search of a "diagnosis". It became clear (in an UNclear way) that we weren't going to "know" what was going on with Beckett in a timely fashion. Life turned into treating "symptoms"....managing seizures, trying to help him grow, trying to figure out why his body wasn't doing things that it should be.

Beckett has been diagnosed with a couple of different things--many of the these diagnosis's coming and going over the years. Septo-optic dysplasia, Periventricular Leukomalacia, mitochondrial myopathy, white matter brain disease, failure to thrive etc. we were told he was blind, would never walk, would never communicate, would never eat orally on his own, and many more "would nevers"....and would most likely not live past 2. We have had many many MANY hospital stays, ups and downs, and he continues to persevere. He began preschool at 3 and we continued living life treating Beckett as normally as possible. We wanted him to have friends, to learn just as his peers, and to push himself as much as possible!!!

Much of Beckett's life has been a series of trial and error. Always kind of pushing...pushing Drs to search for a more concrete and fitting diagnosis, pushing him to thrive, and pushing ourselves to live as normal as possible! Over time Beckett has continued to prove Drs wrong, forge his own path, and become the most inspirational person I could possibly imagine. While he has very poor head control, he IS able to lift his head up and that's a success!! He has a feeding tube, but LOVES mashed potatoes and Chicken and Stars. Beckett is primarily wheelchair/stroller bound but LOVES walking in his gait trainer. He may not be as "normal" as his peers but he engages with them and is adored by them. He "communicates" by "giving kisses", flicking his wrist for "yes", non-verbal "sounds", frowning (even a little glaring from time to time 😉😂), and with a smile and laugh that lights up the world!!! He has a little sister that annoys him (often), and he definitely lets us know!!Beckett has learned how to say "Go" and we hear it often!! (Usually wanting his sister to go away or to "go" in his gait trainer!!). He has far exceeded so many people's expectations of him, and become the biggest inspiration to our little family. For every "low", there is a "high" and we are SOOOOO blessed to have been chosen to share life with him. So we cherish every day, every minute and second, and continue to live our "normal" lives. For Beckett, this means wrestling with Daddy, going to basketball practice, giving kisses, and "running" with friends...all things that make him, and us, smile from ear to ear. We continue trying new things, pushing for answers, striving for greatness, and modifying life!! (last night we did tball in our stroller and Monday we start Sailing!!) There will always be rough days, but there is ALWAYS a new tomorrow!