Landen's Story

Landen's story began on January 24th of 2010. He was 5 lbs. 6 oz. and 17.5 inches long. We were so excited to welcome our second son into our family. Other than being a little smaller than expected everything seemed perfectly normal. We were in the hospital the usual two days and were excited to go home with our new baby boy.

As newborn babies usually do, Landen lost weight and at our first doctor's appointment he was 4  lbs. and  10 oz. The doctor was not overly concerned and encouraged us to come in for weight checks every other week. As time passed concern began to grow because Landen was not gaining any weight. As a precaution we were sent to several doctors but found no answers.

At six months Landen weighed only 8 lbs. 4 oz. and we were referred to a geneticist at UNC hospital. After carefully taking a number of measurements, she looked at us and spoke the words that changed our journey in life, "Your son has Primordial Dwarfism." She went on to explain how rare Primordial Dwarfism (PD) is. In over thirty years of practice she had only seen one other case. Unfortunately, she had little knowledge of PD and what we had in store.

We were devastated, so we began doing all the research we could on PD. We came across the only doctors considered "experts" on PD from Alfred I. Dupont Hospital for Children in Wilmington, Delaware. On a whim we decided to give them a call. It was obvious God was at work as we got through to the assistant of one of the doctors. She took an hour answering our questions and explaining some of the things about PD. However, the first available appointment was several months away. She then excused herself and came back on the phone and said, "It appears we have a cancellation. Can you be here in two weeks?" Of course I said, "Yes!"

God provided for us to go to Delaware on short notice. The doctor was a huge blessing. We learned that Primordial Dwarfism is the rarest type of dwarfism in the world. There are only 100 known cases world wide with about 50 of those in the U.S. There is only a 1 in 4,000,000 chance that a child would be born with PD. The complications these children encounter include bone problems and vascular problems including strokes, seizures and aneurysms.

We are so thankful that the only problem Landen has encountered so far is a hip which was dislocated at birth. This was corrected with surgery when he was 10 months old. He was in a body cast for 4 months. It was amazing to see his determination and strong will to cope with the restriction. Within a day he was pulling himself up and getting around in this body cast.

At one point we participated in DNA research that revealed that Landen is not at risk for the vascular problems. This was a huge blessing. However, the test revealed that he is only one of eleven children in the world with his particular type of PD. In fact, his type is so new that there is not a lot known about it. What we do know is that Landen is expected to get to about 3 feet tall. Also, with the advancement in research, the life expectancy is far greater than it used to be.

Landen is now five years old and weighs about 20 pounds. His determined spirit, outgoing personality and warm smile has been an inspiration to everyone who meets him. We believe God is going to use him in a powerful way to impact the lives of people. He truly is a gift from God.

THE HOPE THAT WE POSSESS
As you can imagine it was a scary time for us as things began to develop with Landen. Because of the rarity of primordial dwarfism, not knowing what was in store was overwhelming.

That first evening of Landen's diagnosis I remember clearly thinking to myself "I'm not going to read my Bible tonight because I'm angry." The next few moments as I battled through those emotions I opened my Bible to where I left off in my devotions the prior evening. I was amazed and aware of the presence of God when I read Isaiah 26:3-4:

     "Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Trust ye in the Lord forever: for in the LORD JEHOVAH is everlasting strength."

This was a divine reminder that God had everything under control! It brought great hope and peace to us that evening in the midst of a life changing day.

Over the next few days it was amazing to see the Bible come alive in so many ways. The following verses were very encouraging to us.

     Romans 8:18 - "For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us."

     Deuteronomy 31:8 - "And the Lord, He it is that doth go before thee; He will be with thee, He will not fail thee, neither forsake thee: fear not, neither be dismayed."

Through it all we have endured. Jesus has proven Himself and His Word true to each of us. We realize there are many families that are enduring a difficult time in their lives. Whether it be financially, physically, or emotionally, life has become unraveled. Maybe this describes your life. We want you to know you can possess hope and peace with a relationship in Jesus Chrsit. Do you know Him as your personal Savior? If not, I encourage you to follow this simple plan.

     1. Realize you are a sinner.

Romans 3:23 tells us, "For all have sinned and come short of the glory of God." Romans 3:10 says, "There is none righteous no not one." We have to come to a place where we realize we have sinned before a Holy God and the payment for that sin is an eternity in hell. Romans 6:23 says "The wages of sin is death." The word "death" here literally means death physically and spiritually. Eternal separation from God.

     2. Recognize Jesus' death and resurrection.

God made a way through his son Jesus! Romans 5:8 says, "But God commended His love toward us in that while we were yet sinners Christ died for us." Romans 6:23 tells us, "The wages of sin is death, but the gift of God is eternal life through Jesus Christ our Lord." God sent His only Son Jesus to die in our place on a cross so we would not have to pay for our sin in hell. He then rose again on the third day proving He was the Son of God. 1 Corinthians 15:3-4 says, "For I delivered unto you first of all that which I also received, how that Christ died for our sins according to the scriptures. And that He was buried  and that He rose again the third day according to the scriptures."

     3. Repent of your sins and call on Jesus.

1 John 1:9 says, "If we confess our sins He is faithful and just to forgive us our sins and to cleanse us from all unrighteousness." In Romans 10:9 we find, "That if thou shalt confess with thy mouth the Lord Jesus and believe in thine heart that God hath raised Him from the dead thou shalt be saved." Romans 10:13 says, "For whosoever shall call upon the name of the Lord shall be saved."


Do you understand that you are a sinner? Do you believe Jesus came and died for your sin and rose again? Would you like to repent of your sins and call on Jesus now?

If you said yes to these three questions then I encourage you to pray something like this from your heart,

     "Lord Jesus I know I am a sinner, I beg your forgiveness for my sin. Cleanse me. Thank you for taking my place on the cross and rising again so I could enter into a relationship with you. Lord, I ask you to help me serve you and live for you for the remainder of my life. I love you Jesus. Thank you for giving me hope, peace and a home in heaven! Amen!"

If you prayed this prayer we would love to know so that we can encourage you and pray for you. Please contact us through the contact form on the right hand side of this page! If you have any questions feel free to contact us as well. Thank you for taking time to read Landen's Story. Be sure to read updates and current information on Landen and follow his story by subscribing to our website.